Women with Bleeding Disorders: Resilience, Hope, and Advocacy with Dr. Danielle Nance

Ever wondered how a bruised toddler grows up to be a hematologist changing the game for women with bleeding disorders? Dr. Danielle Nance takes us on that journey full of aha moments, hard truths, and some laugh-through-the-tears stories.

We’ll chat about missed diagnoses, why words matter, the battle of factor vs painkillers, what imaging really shows, and how to prep for clinic visits like a pro. Plus: parenting through needles, navigating insurance hoops, and building trust with providers (without losing your mind).

🎧 Hit play, share with a friend, and don’t forget to follow! Every listen helps us get these conversations to more people who need them.

Special thanks to Genentech for sponsoring this episode of the Hope Unmuted Podcast!

Chapters

• 0:00 Opening, Guest Intro, Sponsor
• 1:27 Danielle’s Path and Practice
• 3:40 Childhood Bleeding and Late Diagnosis
• 8:20 Growing Up Moderate, Living with Pain
• 11:35 Community, Language, and Being Heard
• 16:35 Medical Training with a Mission
• 20:50 Pain, Factor, and Paradigm Shifts
• 26:45 Relationships, Caregivers, and Courage
• 31:40 Parenting a Child with Hemophilia
• 38:32 Prophylaxis, Needles, and Resilience
• 43:12 Women’s Care Gaps and System Barriers
• 49:40 Microbleeds, Capillary Leak, and Imaging
• 55:40 Documentation, Insurance, and Healing Plans
• 1:01:05 Not Every Pain Is a Bleed
• 1:05:40 Advocacy, Preparation, and Clinic Communication
• 1:09:20 Closing Thanks and Sponsor CTA

Transcript

SPEAKER_08: 0:00

Welcome to the Hope Podcast. My name is Jonathan James, and I'll be your host today to talk more about women with bleeding disorders. I'm really excited about my special guest today, but I want to say a really important thank you to our episode sponsor, Janintec, for sponsoring this episode. Welcome to the Hope Podcast. My name is Jonathan James, and it is such a treasure to be able to bring to you a great conversation today that I'm excited about. Dr. Danielle Nance. It is great to see you. Thanks so much for joining me today on the Hope Podcast.

SPEAKER_06: 0:33

It's great to be here, Jonathan. It's I know it's taken a while to get here, but I'm glad that it finally lined up for us. Yeah. And this beautiful morning in Louisiana with the sun sparkling off that bright green.

SPEAKER_08: 0:48

Well, the best things are things you usually have to wait for. So I have been looking so forward to this for a long time. And we've been friends for a long time. I was trying to remember back how long ago it was we first met, but it it was probably over a decade. And uh and so I uh I just, you know, we've we've uh been able to, you know, talk through a lot of life together through the years, and and uh I've just uh just been such a joy to be able to know you as a friend, but also just have so much respect for the work that you do. And uh I'd love to just start a little bit there for people maybe listening in that don't know you as well as I do. Maybe share a little bit about uh where you live, where you're from, and what you do for a living currently.

SPEAKER_06: 1:27

Thank you. Uh today, right now, we're living in Arizona. So uh kind of in the Phoenix Metropolitan Catchment area. Yeah. I work in one of the suburbs, Gilbert, Arizona, at Banner M. D. Anderson Cancer Center. They have created a nice home for me there and a spot for me to take care of classical hematology patients, um, but also my life's work, my desire, which is to take care of bleeding disorder patients and to help them find a safe place to live and to be hospitalized when needed. But um, mostly so they have access to the right treatment at the right time and according to their needs. So that's what I do. Banner's helping me do that, and I'm super grateful for that. Um, my uh yeah, so didn't know I'd end up in Arizona, but I'm really excited to be there.

SPEAKER_08: 2:23

Yeah, from Utah originally, right?

SPEAKER_06: 2:26

My family is from Utah. I was actually uh born when my parents had a so turn in California. Oh wow. They spent about 10 years in California and uh maybe a little longer than that. Uh four of the five of us were born in California, and then San Francisco got a little wacky in the uh in the mid to late 70s, and my parents relocated us to Utah to a small town near a college. So a small college town in rural Utah. And that's where I spent my childhood and until I was 18 and could leave that small town and head back to the city.

SPEAKER_08: 3:03

That's awesome. That's awesome. Well, I want to talk a little bit about um, you know, you're you're you're in the throes of talking about what you're doing now. Um, you know, you're in the throes of treating people in the hospital, people living with hemophilia and various bleeding disorders. Um, and really at that point of care, you're dealing with uh really having to deal with a lot of expert decision making in crisis moments and and also with the daily management. And I think that the burden of that is is uh something to be admired and cherished, and and I'm so grateful for the work that you do and the stories that we hear from patients that you serve, we're just so grateful for everything that you do. But it didn't start at Banner Health. It started many, many years ago before that in Utah. And so talk to us a little bit about um your background. Like what was it like growing up and and also you're personally affected by bleeding disorder. So tell me a little bit about when that when did you discover that and and what that was like growing up.

SPEAKER_06: 4:01

Uh okay. So actually there's a really fun story there. So I mean, scary, but also fun. I I always had bleeding symptoms. I was that baby who had handprints on their butt from changing diapers and you know, bruises. Um the I think one of the scariest times. My mom is still traumatized by this. My um, I was cutting my bottom teeth. I actually still have a scar on my chin. And um I fell, I think, on the sliding door, and that little tooth sliced my my chin, went through my lip.

SPEAKER_02: 4:39

Oh my gosh.

SPEAKER_06: 4:40

And um, I, you know, so I'm like, I'm like, what, 18 months old? I don't know, very big. And um uh and it wouldn't, it wouldn't quit bleeding. And, you know, um, so it would, you know, it would start and stop and start and stop. And like any kid with hemophilia, they have a mouth bleed and the enzymes in the mouth just digest through that little clot, you know, and it's it's bleeding all over again. So my parents are, you know, very thoughtful, um, religious. It was Sunday. They got my older brother and sister and me together, take us to church. My mom was so tired because she'd been up all night with me and um and not just for one day, but several. And uh, and one of the um one of the ladies at church offered to hold me for a minute so she could go into the bathroom and rest for a minute. And that lady dislodged the clot because she was like, because I'd finally stopped bleeding, and there was a clot in my mouth and it wasn't bleeding anymore. My mom had let it be there. And this lady, this kind lady, you know, she was gonna clean me up. Oh. And uh anyway, so after that, I ended up at the emergency room. And um, she'd taken me to the dentist, and the dentist had tried to cauterize it. I mean, I was the first in my family and the only one among my sibs to have hemophilia. And so I, you know, and and so we were in the emergency room, and um, I think that was the time when my my I was taken away from my parents, and they were sent to like the social work or the police to be interviewed um about child abuse. Yeah, it wasn't the first time, but they didn't recognize the bleeding disorder. Um, my mom has stories about me crawling into bed with her with uh that bleed or another one, and and her um waking up covered in blood and then going to my crib and picking up my pillow and it dripping with blood. Oh my god. And I didn't, you know, I didn't die. But uh I still didn't get the diagnosis of hemophilia until I was two and I had my first joint bleed, and it kind of coincided with when we were getting pictures, you know, those cute little pictures that parents get of all their little kids.

SPEAKER_08: 7:12

All in mills, and like something like that, right?

SPEAKER_06: 7:15

Sears, yeah, something like that. And so uh with joint bleeding, there aren't a lot of conditions that cause that. Um but hemophilia A and B are those. So hemophilia A and B affect muscles and joints in ways that most other bleeding disorders don't happen unless the bleeding disorder is really severe. And then that it's not so subtle, like you're gonna figure that out pretty soon after birth. But um, but not with hemophilia. So uh so when I showed up, because I I I wouldn't stand on my knee, I wouldn't stand on my leg, and it was barely swollen, you couldn't tell. Um, but there's that's pictures actually hanging on my wall.

SPEAKER_00: 8:03

Wow.

SPEAKER_06: 8:03

The one where I'm at least not crying, I'm not smiling, but I certainly don't look happy. And my older brother and sister have this super cute cheesy grins. And I'm standing there just, you know, like stoically. So that that's when I was finally diagnosed with hemophilia. So I was about two. Oh, and um, and uh the lore, which actually I love, is that you know, they couldn't figure out what's wrong. Um, and some female medical student who didn't know any better suggested I might have hemophilia. And that's what led to them doing the right test and finding the hemophilia. So my so I love this story, and I just think that, you know, are that there's always a tension between the structure and free thinking. And you do you really have to have structure in order to allow gene genius to fully develop, or do you need that free, unstructured time to allow those other ideas to really surface? Um, and and so that's a fun, you know, that's a fun place to live and to think about the the boundary of understanding and how it exists um between those two states. Um, so I had a diagnosis at the age of two. This would have been in 75.

SPEAKER_03: 9:33

Wow.

SPEAKER_06: 9:34

Um my but um even my parents weren't 100% sure that it wasn't von Willebrand disease. And so there was always there was a lot of actually debate as I was growing up. Did I have factory deficiency or did I have von Willebrand disease? Because the two were thrown around a lot. I mean, von Willebrand disease was well recognized as a disorder that could affect girls, but hemophilia rarely affects girls. Um, and it certainly hemophilia wasn't well known anyway in the 70s. Um things have changed a lot since then.

SPEAKER_08: 10:16

Um and you didn't have any other like siblings or family history of anyone else having nobody else bleeds except for me.

SPEAKER_06: 10:25

So it's it's very incre incredibly difficult to I have sibs on my dad's side from his third from you know from his cohort. He has half sibs also.

SPEAKER_07: 10:35

Wow.

SPEAKER_06: 10:36

Um that none of them bled, and and none on my mom's side, and there are um seven kids in her cohort, her birth cohort. So, you know, a lot of opportunity for bleeding deserve to be around, but nobody else, and no, no, none of my cousins. It's just me and now my son Isaac. So just the two of us among all those 50-something cousins on my mom's side, and it's amazing. A lot on my dad's side, I don't even know how many. So, yeah, so bleeding disorders were new in the family, and because of that, I will say that I felt really, really alone. My older brother and sister, I love them so much now, but they were not nice to me because they had a perfect life until I was born, and then I was always sick.

SPEAKER_03: 11:24

Yeah.

SPEAKER_06: 11:25

And, you know, and my um bleeding disorder is moderate.

SPEAKER_03: 11:30

Okay.

SPEAKER_06: 11:30

So factor levels between two and four percent pretty consistently. And I went back when I worked at the University of Utah and saw the factor levels that had been drawn when I was 18, 19, 4%.

SPEAKER_03: 11:44

Wow.

SPEAKER_06: 11:45

Factor levels when I was in med school were eight percent.

SPEAKER_03: 11:49

Wow.

SPEAKER_06: 11:49

And I think I was on, no, I wasn't even on birth control there, but I don't think their assays were as sensitive as the ones done at the universities.

SPEAKER_01: 11:57

Interesting.

SPEAKER_06: 11:58

So really pretty low factor levels. And so, um, but not zero. So while I was always covered with bruises and always oozing from some cut, um I I didn't always have the big bleeds. So it was, but it did seem to happen whenever we were on vacation or doing something fun, because that's when hemophilia always gets in the way.

SPEAKER_01: 12:24

Right.

SPEAKER_06: 12:24

You know, you're going to on your trip to California and somebody pulls you wrong and you slip and you get that bleed in your ankle. And then what do you do? Yeah, I remember being at SeaWorld and having uh, I don't remember which joint it was, but hanging out, you know, like limping around that park the whole day and just because, you know, and um, and then we my sister and I got to go and spend um a week with my aunt Jan. It was before she had kids. So we were staying at her apartment in the avenues, and and she and her husband took us to the park. And so my sisters, you know, I mean, she's five years older than me, but she was also much bigger than me, too. So kind of heavier set even as a girl. And so uh we were playing on the teeter totters. You remember the old ones with the the wooden teeter totters and the tea?

SPEAKER_07: 13:26

Yes, yeah, yeah.

SPEAKER_06: 13:27

Oh yeah, you know those, right? Oh yeah, oh yeah, dangerous.

SPEAKER_08: 13:31

I got my ankle caught under one one time, and I paid for that for a long time.

SPEAKER_06: 13:36

I have a similar story. Okay. So she, you know, so she would go down and then bounce.

SPEAKER_07: 13:42

Yeah.

SPEAKER_06: 13:42

And I would bounce up off. Yeah. Oh my gosh, I loved it. We had so much fun. And so then, um, so we did that and I was fine. No injuries, perfectly fine. I mean, felt like I was gonna fly off the handles, but we had a great time. And then she got up off the teeter-totter, and then instead of letting me down gently, it like slipped out of her hands, right? She got off and I fell down to the bottom, and and my knee caught right under that handle. So uh left knee pain ever since. But then I'm on the couch, right? And I cannot move. And my aunt wrapped it up, and you know, and I I mean, you can't you can't move, you can't stand up. Your older sister's like, you're ruining it for us, you know. And I I literally cannot, uh, you're so uncomfortable. And you know, and I um I don't know if it's because I was the middle child, um, but you know, I I just I learned not to talk about it. You know, you just you hide it, you hide it. Even though you're you're it's swollen, obviously. Anyone can see, but no one knows what that feels like. And you know, and as a as a med student, and I learned what that means, that it's the blood pressure that meets the tension on the skin before that joint stops bleeding, and you feel every press of your heart against that joint capsule, and that isn't fun. And it takes a long time before it stops bleeding and stops hurting, and standing in the shower, you know. And I um I had I had had factor when I was four, right before my fifth birthday. I think I had been jumping off the bunk bed with my older brother and um and ended up with an ankle bleed. And so whole family. I it might have been it might have been for Christmas, it might have been for Thanksgiving, but we lived in about two and a half hours by car away from my parents' families in the north near Salt Lake City and Farmington area. So, you know, for Thanksgiving and Christmas, we would always head up north. And I think um so it had been before, it had been before, and um, I'd had the ankle bleeds, so it was sometime around the holidays, and so they put me in the car, in the back of the car with this big fat ankle, and it was cold, and it was before the time before seatbelt. So I'm in the back and bouncing around, and um, I mean, I remember that ride. It was so painful. I'm like four, right? And I was cold and I hurt, and then we ended up, and it was dark outside, and we're in the ER, and um somebody put me, put my foot upon a pillow and packed it with ice, so I was already freezing, and they put ice around my ankle, and then they took me into a room without my parents.

SPEAKER_05: 16:58

And they eventually gave me some fatter. So they put an ivy in without and there was some lady You know, because they had a you know that the communal rooms, right? With just the sheets between so it wasn't like it wasn't like I was alone, but I wasn't without my mom. This poor lady, you know, she was, you know, she reached over and tried to comfort me the best she could. She was an ER2, right? I have no idea what her story was. And um, so they gave me factor, and I don't remember anything else but that. Um, but a few weeks later, um, all the kids were together and um and I was sick, and so we stopped at the hospital again.

SPEAKER_06: 17:54

And I had I had hepatitis C. So it was right before HIV. But um that infection that turned me yellow, and my mom said I was sick for almost a whole year, and I I didn't eat my birthday cake, my sister ate it because I was sick and I didn't want to eat anything. And um, but that probably saved me from HIV because after that my parents did not take me to get factor. Why? And I I sat on the couch until my bleeds went away. Um, the only time I got factor is when I broke my arm. And uh, that's another great story chasing a boy, slipping on some grass. So yeah. I was eight, I was in the third grade. Oh my gosh. But um, yeah, but uh so the the factor the factor um that gave me hepatitis C allowed me to escape from HIV. So I'm grateful for that. But it was still, you know, it was still a lot. And then there was always confusion, right? Some doctors would tell me I had a bleeding disorder, others didn't. Um it was shameful to me. So I think I think that having that duality and trying to make sense of that and knowing the limitness, the limitless of my mind. And when I didn't have a bleed, I was strong, and I could ride my bike bike so fast. And then having my parents tell me, don't run, Danielle. And I'm like, what are you talking about? You know, my body feels great. I love being in my body, right? Right. You know, and like you know, I I I mean, I think we all have that degree of joy of just being alive when you're a kid.

SPEAKER_08: 19:58

One of my favorite memories as a child for me was I used to love to run. And I would run in the backyard and I would just run and run around. I I I felt like I was going 100 miles an hour, probably only going like, you know, you know, not that fast. But you know, I had this uh dog for a period of time that would chase me around the yard, and my whole goal was to run faster than he could. And I'm pretty sure that he could always catch me, but he would let me win. And that was just, I just remember the wind in my face and just this running. And and inevitably I had way more ankle bleeds than I had the ability to do that. But it was those few days where sometimes it you could do it without you know a problem, and then other days it would turn into some massive hospital visit. But you know, I remember that too, or just like, I just want to do this, I want to run, I want to be free, I want to feel the wind in my face, and and uh it's so odd how like sometimes you could do it and it was like no big deal, and then other times you you know, the smallest little you know twist wrong. Right, yeah, a little step in a little hole in the yard or something and you're done for. Yeah. Yeah.

SPEAKER_06: 20:59

Yeah.

SPEAKER_08: 20:59

And and dealing with the emotions of that as a child, too, is very uh I think I think this is a difference between sometimes men and women is like guys are so thick-headed, we're we're just gonna like keep being bullheaded about it and try it, you know, over and over again. But I think sometimes like one of the things I've learned from watching my girls go through their suffering with a bleeding disorder, it's like there is a, there's a uh they're present in it mentally and emotionally when it's going on. And I think for me, it was like I would just get angry and I would just get, you know, I'd want to reject life, I'd want to reject everyone around me. I'd want to, you know, there's a sense of like, and then and as soon as it was it was over, it was like I just didn't want to deal with what just happened, you know, like whatever that experience was. I just wanted to get over it, you know. But watching my girls go through that, they they they approached it differently. Like they, it was like they were really present in it. And then and then when it was over, when when a bleed was over, something was going on, it was like there was this sense of like, you know, it it was it it lived with them. There's a sense of like this continuation of processing, and it seemed to be connected, you know. And I and I've I've actually learned from watching them go through it how to process my own mental and emotional, you know, uh well-being through all of that too, because I I I I don't think I always process that as a kid, you know, right not that anybody really processed it perfectly, but it's just there's a sense of like, you know, having to deal with that. I know for you that you're surrounded by people who don't understand the clinicians that you're seeing have mixed reviews on whether or not it is this or isn't this. You know very presently what's going on in your body, but then you're just a kid. And so it's how did you deal with all of that?

SPEAKER_06: 22:44

Well, you just said a lot of things.

SPEAKER_08: 22:46

I know. Sorry.

SPEAKER_06: 22:48

Thanks for sharing your perspective also.

unknown: 22:51

Yeah.

SPEAKER_06: 22:52

That joy de vie of just being alive, yeah, and know and having those periods of super strength, yeah, and then being restrained hardcore. And it's not because anybody told you you couldn't.

SPEAKER_01: 23:07

Right.

SPEAKER_06: 23:07

It's because you really cannot.

SPEAKER_01: 23:11

Right.

SPEAKER_06: 23:12

And no one can save you from that. There's nobody, no one, there's no superhero that's gonna be able to remove that pain for you.

SPEAKER_01: 23:22

That's right.

SPEAKER_06: 23:23

Doesn't matter how smart they are or how you know much money they have, or how you know absolutely. So I don't think I processed that well as a child either. And I don't think any adults in our time really had the skills to process that. You know, we just, you know, the time in the 70s were a strange time looking back on it. Um, we had uh cheap gas, we had fast cars, we had telephones that you weren't 25. Well, they still were, but starting in the 90s, voiceover IP started and the prices of phones came down. But the information exchange was picking up, and then we had factor, it wasn't perfect, but we still had something better than a blood transfusion to treat hemophilia. So things started changing all through the world. And we have children now that are teaching us we might have ADHD, which I definitely have and didn't know it. So part of my unbridled energy was a very busy mind and um being hyper-focused on some things and not on others. And I think hemophilia tends to push you into a place where you can have a fantasy land a little bit and escape what's happening around you. So um, you know, so I mean hemophilia is good and bad. I I uh I gosh, never expected to make it to 50. I pretty I was pretty sure I wasn't going to. I remember having a conversation, I think even before my period started, where my mom was I was so excited, I wasn't gonna I was gonna grow up, I was gonna have five kids, I wanted to be a mother, you know?

SPEAKER_03: 25:18

Yeah.

SPEAKER_06: 25:19

And my mom like super serious.

SPEAKER_03: 25:22

Yeah.

SPEAKER_06: 25:23

No, Danielle, not for you.

SPEAKER_03: 25:25

Yeah.

SPEAKER_06: 25:26

What?

unknown: 25:28

Crushed.

SPEAKER_06: 25:29

I was crushed. I was like, what are you talking about? You know, I mean, I'm a baby, I don't know. Yeah, I don't even know what that means. I haven't even had a period yet, you know? And it was later, much later. My mom and dad had been told when I started my periods I might not survive that first one.

unknown: 25:46

Wow.

SPEAKER_06: 25:46

So I had been treated differently than my sips. I knew this, they all knew it. And I didn't know why.

unknown: 25:55

Wow.

SPEAKER_06: 25:56

I didn't know why until much, much later. I mean, I think I was maybe even in my early 20s before my mom admitted that to me because I had paid made it through my phrase.

SPEAKER_01: 26:06

Right, right, right.

SPEAKER_06: 26:07

Now they were messy, but they were mine, you know, so I didn't know any differently. Right. You know, and um uh yeah, I went through a lot of pads, but again, you only know that was mine.

SPEAKER_01: 26:20

Yeah, right.

SPEAKER_06: 26:21

So um anyway, so we, you know, we we weathered a lot of we weathered a lot of uncertainty. I made choices that I didn't I I in retrospect I wouldn't have needed. I suffered depression and treated that with substances that um probably weren't that great for me. But um I I mean those were that was all I had. And that's you know, um, and that's what that's what I did.

SPEAKER_08: 26:51

And so treatment for going when you're going through your mint menstrual cycles was not probably not even on the table. They weren't even thinking about prescribing back then for that. Yeah. Wow.

SPEAKER_06: 27:01

No. I I I got married really young, so I was only maybe 19 when I got married. Yeah, yeah. And then I got on birth control pills, and that did help with a lot of symptoms. So um the the nine years or so I was on birth control or whatever it was, eight years maybe, um my bruising was better and my periods were better. And I didn't realize at the time though, but the estrogen itself helps to seal up the leaks between blood vessels. Wow. And so estrogen treatment actually does help with bleeding symptoms, and it's a great treatment for people who um do not net yet need their uterus and ovaries. So um, yeah, so that was a bonus that I didn't expect to get. The happy accident, that's right. Um, but uh yeah, so uh definitely difficult young, uh young adulthood. So, so but I will say my uh I I feel blessed and lucky, and I know there are times when whatever is out there has protected me. And I, you know, it's almost as if I had some little angel on my shoulder saying, No, when a couple of my girlfriends got into like heavier substances and they never offered them to me.

SPEAKER_02: 28:20

Why? Right?

SPEAKER_06: 28:21

They never it was never even they and I I found this out later that they, you know, in fact they sort of distance themselves because they interested, they weren't even gonna, you know, no, this is not for her. And and other times in my life where um I I could have I either was able to remove myself from situations or situations removed themselves from me and I felt protected and I felt loved and that um when I I dropped out of college for three years and found my way back and with support from some family members so I could get back in there. I lost my scholarship, but so I could get back to school, people who, you know, recognized in me that there was more than a bleeding disorder. And um, but things actually didn't really turn around for me until the bleeding disorders community and I found them through my treatment center. I I was like, look, I really think I want to be a doctor. And they're like, Well, we don't have but I need volunteer work. And they're like, Well, we don't have anything for you, so why don't you go to your local chapter that was a Utah chapter of the National Humothill Foundation? And um, and for the first time in my life, a woman who didn't have a bleeding disorder, but knew a lot of people with bleeding disorders listened to me and knew when I said I would get that tingly bubbling sensation in my knee, she'd heard that before. And so suddenly I had a language. I had a language to talk about what had happened to me in that loneliness of physicians not knowing, showing up at ERs and them and saying, I have hemophilia. I have factor eight deficiency. I could say those words as a 16-year-old. I have factor eight deficiency. I need factor eight. And the doctor looking at me and taking more blood and saying, You don't have hemophilia. You have on Milibrand's disease. And you're not bleeding right now, but I just came from I have this cut in my mouth. I just picked up my pillow and it was dripping blood. And I know I'm gonna re-bleed. And they're like, You're not bleeding now, go home, and me coming back a few hours later with now a big swollen libbin. You know what I mean? Like, and this happened every time there was a problem. So, so yeah, I went into medicine with prejudice. Why are the smartest people on the planet so dumb? And no one can tell me what's wrong with me. What is wrong with me? I don't know. I really want to know. And I honestly, um, you know, I I I went to medicine to learn about hemophilia and what was wrong with me. And medical school taught me how to be a physician. Um, I felt like an infiltrator for years. I'm like, all I care about is hemostasis. Get me into the clotting factor, show me about that, you know. And then I'm like, wait, what's the PT and the PT again? What's the intrinsic plastic? Wait, what are all these factors? Uh wait, I need to know renal disease. What are you talking about, Gout? This is an old disease. This doesn't even have any people anymore. So, you know, I was a history major, um, but mostly because that was gonna be easy for me to get straight A so I could get into medical school, right? Like that was my whole idea. I love history.

SPEAKER_07: 32:02

Yeah.

SPEAKER_06: 32:03

And so when I started picking up the history of medicine books and learning about the history of medicine, then I could learn medicine because that was the language that I knew. So it was really, you know, me figuring out how does my brain work?

SPEAKER_01: 32:20

How do you learn?

SPEAKER_06: 32:20

How can I figure this out?

SPEAKER_01: 32:22

Yeah.

SPEAKER_06: 32:22

And what does it mean to me? And so um, yeah, so the bleeding disorder community taught me how to use my voice, get invested in me, some leadership training, helped me start to frame the issues that are important to me as a woman and as a person with hemophilia. And um, and then I was able to take that encouragement. And uh there are a few women out there who have continued to support me in those moments of doubt, and there are a lot of them when you're tired and you you know, I I um I didn't get into medical school the first time I tried. So I had to take some time off, take some more classes and reapply. I didn't have the most confidence when I started. I didn't have the most confidence when I graduated med school and started my internship, you know, and uh but at every turn that the bleeding disorders community was there for me.

SPEAKER_05: 33:28

Every time I faltered, they picked me up and they keep doing that, you know, and they and I I come to conferences and I remember why I'm fighting, and it's it's okay to take time for myself and focus on myself.

SPEAKER_06: 33:44

Um, but I still have the work to do. Yeah. And I'm still, you know, I'm still gonna do it, and I still it's still fair, you know, 20 years into post-medical school graduation, I'm still just getting started.

SPEAKER_08: 34:00

I always say that, you know, the best thing about being diagnosed with a bleeding disorder is the community that comes along with it. And that's right. I just feel like so many people who are not involved in the community also are missing a big, big piece of the you know, of what it's like to have a sense of community. Yeah, yeah. And and some some people are able to sustain that, but there's so much value. I I love what you said about starting to form a language. There that can be so it sounds simple, but it can be everything. Because it's when we gather together and share our stories and our experiences that we begin to frame a language, like you said, around our experiences and around what what's going on. That you said, like the tingly and the bubbly, like that stuff may sound like what are you talking about to most people. But I think once we get together and we start talking about it, we're like, oh my gosh, I really have had that feeling a lot. And I didn't know that if I really think back about it, that was actually the very beginning of it turning into burning and swelling and pressure and heat. And oh my gosh, it turns into a fully blown, you know, metastasis bleed. And it's in those things that you begin to get a certain language for yourself that helps you to be able to advocate in those emergency room moments or helps you to be able to defend yourself against an insurance denial because you have been equipped because of the language that it comes from communicating.

SPEAKER_06: 35:34

From communicating. That's right. And and that that that is, I think more than anything, the superpower that I now have, because I know those words from my body, the experience I have in my body. And physicians are using this now. They're talking about lived experience experts. So that the physicians who I have worked with and learned with and struggled hard to gain the knowledge that I have, for them to start using words like that is so hopeful. And then, you know, one of the things that we talked about in the pre-meeting, you know, work was, you know, it was maybe to talk about, okay. So one big focus of my work is as soon as I got into medical school and I started to see what it takes to acquire that knowledge and to put off uh, you know, like my other friends are, you know, you know, I work 50 hours a week. And then I have to do continuing medical education. So I have to carve that out of my personal time. Um, I have to, you know, I mean, I have to carve out of the time the people who are calling me on the evenings and weekends because, you know, um, I have a doctor. I don't have a life, you know. I mean, they I they've got an issue and they need help right now.

SPEAKER_00: 37:02

Yeah.

SPEAKER_06: 37:02

And, you know, and all the medical questions from my friends and family members that don't have bleeding disorder. So, you know, it's like there's a continual stream of interruption to whatever I might want to do to restore my own health. Um so I guess in Arizona, you know, I'm hoping to see as many people as I can and help to see them. And um not that I want to put myself out as some but I am an access point to medicine. That's what I see myself as. The access point. So how can I be a greater node? How can I have greater reach? That's where I'm going. And how can I help teach patients to be seen?

SPEAKER_02: 37:50

Right?

SPEAKER_06: 37:51

What are the right words to say? What is the what what is the language physicians use to speak to each other? What is the language physicians use to speak with insurers or hospitals? What does that look like? How do we open up those roads? What do I need to do as a provider to help other providers recognize those words, those words that mean a bleeding disorder, those words that mean a sickle cell crisis, so that they're not dismissed as chaff, but actually as wheat that needs to be collected and gleaned and sorted. And so I've spent my focus since I've been in medical school when I'm at patient conferences, and I did this at the Hope Conference a couple years ago, and I've done it at the ladybugs conferences and chess conferences. How do we open up that communication between the patient and the physician? And it it starts with keeping it iry. What is your body telling you? What is happening to you? As um a trainee at the University of Utah, there's this one woman whose son had severe hemophilia, and she had been recognized by um the team members who were training me that she had low factor levels around 20%, son had severe hemophilia, she had you know, she had mild hemophilia, 20% 20%. And um and they had offered her DD ABP as treatment because she had 20% of factor levels and she did respond, right? Um so uh, but I don't know if she went far enough in explaining to them, or maybe they didn't ask. But we're in the, you know, we're in the clinic room together, and you know, I'm a fellow, so I've got a little bit more time. I've only got two or three patients on my schedule, you know, like so I have an hour.

SPEAKER_01: 39:55

Yeah.

SPEAKER_06: 39:55

I'm gonna spend as much time as it takes. And then I'm anxious and nervous, so I can't ask the questions right, and I gotta fill out this whole HP, you know? And I'm like, and um and I have ADHD, right? And I don't know that I have this yet, but I just know that I'm struggling and I feel like I'm always behind. And you know, my daughter diagnosed me. What? Yes, she's like, Mom, I think you have ADHD. And I'm like, what are you talking about? That's for little boys that are running around like crazy. That's not for me. I went through medical school, right? Like, I got that dream.

SPEAKER_02: 40:29

Right, right, right, right.

SPEAKER_06: 40:29

And it had nothing to do with girls. There were no girls in there. They didn't even talk about girls in the training, just like they didn't talk about girls. Like women's health has been ignored just this whole time. You know, it's like it's not just hemophilia people, it's it's women's health in general.

SPEAKER_01: 40:52

Right.

SPEAKER_06: 40:52

So, yeah, so that's a topic for another day. But um, okay, so I'm talking to this lady, and she's telling me about uh that when she takes DDABP for her joint bleed, it does help. But then she's in bed the whole next day because she gets a massive headache. And I was like, Well, did you tell him about the headaches? No, I didn't tell him about the headaches. And I was like, Well, okay. And I'm like, Well, how often are you taking the DDABP? About every week. I'm like, so your ankle feels better, but then you spend a day in bed because of the headache, and this happens every week. Yeah. Well, eventually it comes up that she's used her son's factor. Because I she knows I have a bleeding disorder and I'm listening to her. Right, right. Right? And I'm like, well, what happens when you use your son's factor? And she's like, oh man, I didn't have a headache and I felt so much better. It's so much more energy the next day. And I'm like, really? Yeah, right. And I I am keep in mind, I am not even on regular factor myself now. So I, but I end up using it about every 10 days because I just can't handle the pain, right? I actually going back to me, I actually got in trouble during my internship year, during my ISU rotation call because I it was so much energy for me to get up out of the chair. It hurt so much. And I'm used to this. This is what I live with every day. I don't even think about this. It was so much work for me that it I would have to think about getting up out of the chair to go in and like to rush to a coat or whatever. I was taking Tylenol every night to sleep because my joints hurt so bad. And it turns out that that that was interfering with my ability to think is the Tylenol every night. Am I just sensitive to it? But if you take it every single night, then it's not good for your body. It's not good for your brain. And I I realized when I was using factor that I could think a lot better the next day if I didn't have Tylenol the night before. And so, but this is years later, right? I don't know this at the time that I'm in my internship. Uh they just know that I'm I'm not hustling the way I should, right? And I don't know that it's because my body hurts so much and that this is impairing my ability to be a physician. I don't even know this, right? Right. Because if you don't have factor and you don't know what you're missing, you don't know how bad it can be. So uh um, and just jumping ahead, um, my husband came with me to one of my appointments with my physician, who is also training me as a hematologist, and he's like, I think she needs more factor than what she's getting.

SPEAKER_00: 43:55

Wow.

SPEAKER_06: 43:56

And my hematologist is like, well, she should maybe get on three times a week factor. Boom. Or twice a week factor. I'm thinking, I'm thinking. Yes. So my husband is the reason why I started prophylaxis.

SPEAKER_08: 44:10

Which is wild to think because you here you are, the one living with bullshit. I have to say, that makes me feel so much better about my lack of being able to explain stuff because I'm an explainer. So I go through the motions of explain, but it took me a lot, especially through my teenage years, my young adult years, like I would just want to go in, you know, just whatever they're gonna do, and then get out. And I didn't explain very much. My my wife was the same way. I get married, and she's like, Well, did you tell them about this? Did you tell them about that? Did you tell them about this? Did you tell them? I'm like, Well, no, why would I do that? Exactly. And so I, you know, but here you are in school learning about all of this, and like you're in practice and all these things.

SPEAKER_04: 44:50

And it's like, I'm in my 30s.

SPEAKER_08: 44:53

Yeah, you're still not putting two and two together enough to be able to think, oh, I need to bring this up in the clinic because that's so amazing. Wow.

SPEAKER_06: 45:00

Yeah. So it was my husband. Wow, because he could see how much better I felt. And it and every dose of factor was an agony because I was like, oh, but it feels so good. I just I want to feel better, you know? And I know I feel better after dose of factor. Factor's magic.

SPEAKER_00: 45:16

Yeah.

SPEAKER_06: 45:16

You know, you feel good. And I'd had factor in my fridge since I was in my 20s, but it's always like, you know, am I going to use this? Am I going to use this? You know, and uh that yeah, that decision to start prophylaxis, um, it it really helped to liberate me from the day-to-day achiness.

SPEAKER_00: 45:36

Yeah.

SPEAKER_06: 45:36

And, you know, and as factor products have gotten better, then I realized like every little step where you suddenly you're like, well, now I thought that was a good factor. Yeah. You know, and then you feel, and then you started a newer generation, and you're like, well, now that does feel a lot better. And then you get the next generation, and you're like, holy crap, my body stopped falling apart. I don't feel worse every week.

SPEAKER_08: 46:05

Yes. You know, and there's been traditionally a lot of apprehension. There was such a period of time where people thought that maybe inhibitors were caused by changing products often. There's a whole generation of people out there that are like, it if it ain't broke, don't fix it. Like that's right. And that's that's been interesting to see how like now that that has kind of been debunked and we're now in this new wave coming.

SPEAKER_06: 46:25

We understand a little more.

SPEAKER_08: 46:27

Yeah. And and uh I have to tell you this story because I I'm not sure that you know about this, but that you made a huge change in my life personally. We were having uh, we were at a dinner or something one time. This is going back like maybe 2016, 17, somewhere in there. And um and and you told me one time I was I was going through some sort of you know diatribe about how, you know, well, factor doesn't help pain. And some people think that it, you know, it's like an it, you know, it doesn't really help with pain. I mean, I I I'm gonna I'm gonna infuse and then arrest, and then eventually it'll get better. But there's no real connection between factor and pain. And I don't remember all the reasons why we were having this conversation, but you looked at me square in the eye in the middle of that conversation and you said, but it does. And I was like, no, it doesn't. And you were like, but doesn't it? It was this very somber. I just, it was, you know how sometimes you're in those conversations and it's like time slows down and it's like a slow-mo moment. Yeah, I remember that. I was in my I was in my flow and you were interrupting my flow and going, no, no, there's there's a connection. And I was thinking, well, maybe there is. And and from that moment, and we talked more about it that night, and I was thinking about how there's this and your point was, you said that if the cause of the pain is the is maybe a microbleed or a bleed or inflammation, whatever the cause of the, if the cause of the bleed is from you having, you know, the not having enough factor, and then you give it factor, that is going to interrupt the pain cycle because it cannot continue to fester if it's being, if, if it's being solved in the hemostasis. So in that, in that moment, I just I still look back at that conversation oftentimes, and I s it really, it actually began to change a paradigm for me long term of at the time I was only, I think, correcting to maybe like um 50 or 60 percent, you know, uh on my prophylaxis regimen. And I will be the first to admit um uh that I wasn't the most disciplined at staying exactly on track. I'm like three times a week, and then I'm like, oh well, maybe a little bit, you know, I'll fudge a day because I'm going to the beach with the kids, and then I'll get it the next day or whatever, you know. And uh, and so in the process of that, you know, there's this sense of of like, I just started to, even in that conversation, I started to make the connection. Wait a minute, maybe there is a connection between getting a treatment and it it reducing pain. Not that it, not that it's the same thing as like a Tylenol or whatever, but it's but it is the it there's it's going to address the actual root problem, and that in correlation is going to affect the pain. And uh it made me start thinking differently about how to be consistent and disciplined, and it improved my treatment regimen. I ended up having conversations with my doctor, and we started going through, you know, and so then we changed it from 60% to 100% correction. Then from that, we started to, you know, modify the frequencies and look at PK study results. It made me start to like investigate something that I had not even considered. And it brought me to a place where I could start to have collaborative conversations with my physician in the clinic setting. And I think when I talk to people in the community, it's it's it's so commonplace that you have an you have a let's say you have an annual visit with your physician, which I know some people have more higher frequency than that, which I'm thankful for. But you you're really just you're lucky if you get 30 minutes, you know, to talk of uh to review everything that's occurred in the last year.

SPEAKER_07: 50:00

Yeah.

SPEAKER_08: 50:00

And so you're prioritizing what you're gonna talk about. And so you end up only talking about the really large things, and sometimes they say, Well, you should try this or that, but there's not even enough time to explain why. This is why self-education is so critical for all of us.

SPEAKER_07: 50:14

Yeah.

SPEAKER_08: 50:14

But it is in those connecting points. I think we were at a national, you know, uh community meeting, and it was like the fact that we were there to have that conversation, and you were able to say, No, I I think there's a connection. And, you know, are you like well convinced that it was definitely a connection? And I was the one that was like, no, I was skeptical. But it was it is those those types of things that really can change the trajectory. And I know I've lived with a lot less pain because of that conversation. And so your ability to get to a place of like having that freedom in your own discovery is also helping, you know, it's helping me, it's helping others. It's kind of so it's not just that the medicine is advancing, it's not just that there's more, you know, clinic visits, even. It's sometimes it's a the problem is between our own two ears.

SPEAKER_01: 51:01

And this is very often the problem.

SPEAKER_08: 51:05

And so I'm just I'm grateful for for both. I'm grateful for the advancement of medicine, and I'm also grateful for the conversations and and these moments because it's like it really can be life-changing if you embrace it, you know. And for me, that whole pain conversation was really just I just didn't I just always quite a bit too.

SPEAKER_06: 51:22

That's where it is, though, right? Like, oh, we have all of these big fancy things. We have telescopes now that can peer into the origins of the universe. You know, we we have AI that can do a lot of hard thinking for us. But at the end of the day, what we have here on planet earth are relationships.

SPEAKER_01: 51:41

That's right.

SPEAKER_06: 51:41

We have personal relationships, and this is how everything gets done. Everything gets done because we know somebody, and somebody knew us. And, you know, um the the best outcomes for patients are the ones in which the provider calls me or picks up the phone when I call. And I can talk to them and say, Well, you know, this person is anxious because they're hurting. And so when you talk to them, please recognize that that they are not crazy, that they are just anxious because they have PTSD from the last 12 times they were in the ER and nobody listened to them and they got worse. You know, and so having, you know, having courage, internal courage to open up your voice and to allow it to be heard. Even if somebody shoots you down, you know, that internal courage, that that's what we in the bleeding disorder community can can help foster. And that's what happens when you come to a dis uh any any of the events to gain solidarity and to education.

SPEAKER_08: 52:59

Yeah, and it's interesting, like even in your own story about your husband bringing up, you know, here you have the two most scientific minds in the room, and your husband, who is probably the least medically trained, goes, I've been observing this. This is definitely, I think she needs more factor. And that becomes the point of change.

SPEAKER_06: 53:16

It's like our support system sometimes, we can also, you know, yeah, let's not underestimate our our uh partners, yeah, right? Whatever gender, whatever role. And I, you know, I honestly I didn't think I was gonna be a worthy partner because of the hemophilia. You know, I mean, you're as a woman, if you can't have babies, if you don't have a healthy body, it doesn't really matter what you look like on the outside, okay? And I mean, I'm not unattractive, but you know, not knowing when your body is gonna just freaking totally crap out on you at any moment, right? You can be perfectly happy one minute and absolutely fine. And the next minute, all right, we're done.

SPEAKER_05: 54:08

Right, right?

SPEAKER_06: 54:09

Like it's it, that's it. I'm you know, I uh uh I'm I'm on the bed for the day, right? You're in charge of everything because I can't move. I have to sit still. And um, I mean, I didn't do a very good job of sitting still for a long time, so you know, my body is not it looks great on the outside, but it does not feel good on the inside.

SPEAKER_08: 54:32

Um, but um in that exchange with your being vulnerable. Leaning on each other, too. Yeah, he probably stepped up in ways that he didn't expect to be able to see, you know, but he found strength in himself, I would imagine, too. Yeah.

SPEAKER_06: 54:49

That um vulnerability, um, which is inevitable and it doesn't matter the couple, but with hemophilia, it can really connect you with somebody else in a profound way when it can be shared. And you can't I mean, let's be honest, with your bleeding disorder family, there's a different connection, but they're still on the outside, they're not in the day-to-day with you. Alex's biggest thing, you know. I I um Isaac was three uh when we when we moved in with Alex, and I was like, look, I know we have this connection, you know, we love each other deeply, but it is not gonna work unless you can learn to infuse Isaac because you will have to. I won't be here and you'll have to do it, you know. And I knew what the time commitment was as a physician because I'd already been doing it, and and I I was like, you you're gonna have to do this. And he's like, I he's got a needle phobia. And he was like, No way I can do this. And I'm like, there's not a choice, this is it. You know, I'm like, with me comes a baggage.

SPEAKER_08: 56:06

A lot of people talk about wedding rings, but in hemophilia we talk about needles.

SPEAKER_06: 56:10

We're talking about needles, you know, and I gotta tell you, he people surprise you. You know, you you think humanity is really horrible, and it can be, but people can surprise you. And we get to see that a lot, I think.

SPEAKER_08: 56:25

So he embraced that and he was like, Yeah, well, he you know, he he did, yeah, and he did it for me.

SPEAKER_06: 56:32

I was worth that, you know. And um, well, I would say, I mean, getting my medical degree and being accepted as a doctor and not just a person with a bleeding disorder, that was a that has been great for my ego. But my relationship with him, and he's been, you know, always kind to me. And I I don't think that that's that certainly hadn't been true in previous relationships I had. And so I am grateful that it still exists on the planet. Yeah, that is pretty awesome. And I know it doesn't happen for everyone, and so again, I'm blessed and lucky. I've got great kids, I get to talk to people all day and help them live better lives and with their bodies, get to know their bodies better, find better ways to care for their bodies. I get to do that for my job, and I am a lucky, lucky girl. Hemophilia sucks, but together it's less bad.

SPEAKER_08: 57:35

Yeah, the interesting thing about it's like, you know, the unsung hero in the hemophilia story is the caregiver, right? It's always the hemophilia.

SPEAKER_04: 57:42

It is, it's always the caregiver.

SPEAKER_08: 57:44

And um, you know, I think that uh, you know, it's interesting the the endurance and the fortitude that comes from having getting, you know, they say like you know, you've heard quotes from like Michael Jordan and these elite athletes, right? It's like, you know, they say, well, you won this many times, right? And he's like, Yeah, yeah, but but what you don't see is the 10,000 games that I lost or whatever. You know, it's like, yeah, I won a thousand, but I I lost 10,000, you know, and it's you know, like in those quotes of those elite athletes, a lot of times they're saying, like, it's it's really that you just it's all about loving the practice and learning how to embrace the challenge of getting up to bat every single day over and over and over and over again. And so the people that have had more opportunities to get up to bat more often, usually the ones who seem to be like the rock stars, but it's really because they had more practice. And I think with a bleeding disorder, you have the opportunity for this emotional interruption, depression, anxiety, pain. You get up to bat at like life's hardest challenges. You know, romantic relationships being difficult because of this extra additional burden that came into it. It's like you get up to bat for that so much more frequently than maybe the average everyday person might. But for those who embrace it, there's something that can be so much, I believe, even more sweet about those things because you've had an opportunity to be really tested by those fires that give you that fortitude to be able to continue to press on when maybe, maybe other people in the rest of the world don't always have the fortitude to press on. And and so there, there is a beauty for mashes story, I think, from from a lot of folks that feel, you know, that have been through that that that pressure. I want to talk a little bit. You you mentioned Isaac. So uh, you know, we haven't really talked about the difference between being a person living with versus being a parent of. And I I I mean, if there was a, you know, I I have said about watching my girls go through their their challenges that, you know, I people ask sometimes, is it harder to be the the patient or the parent? And I feel like it's been harder to be a parent because at least if I can go through the pain myself, I know what I'm dealing with. But if I'm watching them, there's so many they they don't have the language yet, or they're learning, or they're just trying to figure it out, or they're feeling depressed and insecure about their own perspective. Personal, you know, situation. So, you know, tell me a little bit about what was it like having Isaac, and then all of a sudden now you're the parent. You got to be the one in charge and trying to walk through that journey with him. What was that like?

SPEAKER_06: 1:00:13

Like, how many hours do we have? Yeah, as long as you want. I know. It's uh um how to put it in a nutshell. Well, okay, so we I'm gonna step back just a bit, right? So when I was in the fifth grade, in the back of the room, there were these first aid um books. And I was like, hey, Mr. Anderson, when are we gonna? You know how you go through the different books on the shelves? I was like, when are we gonna look at these books? You know, and and he's like, they were from the 50s, right? They were these old first aid books written in the 50s, and they were just there. And he's like, Oh, we're not gonna go through those. And I was like, Well, can I read them? And he's like, sure. So there were a couple different, you know, there were multiple copies, but there were a couple different ones. And so I brought all those home one by one and read them. And I I think I wanted then to be a physician. I'm pretty sure I got it into my head then. And I didn't know until I was applying to medical school, and I I asked my parents' support. I was like, look, I'm gonna go to medical school. I know this is gonna be hard, and so I'm gonna do this, but I need your support. And I made them this spaghetti dinner because that's because I was so poor. But you know, they said, yes, Danielle, if you get into medical school, we'll support you, we'll help you, whatever that means. And so um, so I was like, great, okay, awesome. Yeah. And um and my family did support me. Um, they they my mom would come and stay with me and help take care of the kids during, you know, during medical school when I had exams so that I could focus on exams rather than taking care of my children. Because I had Serena, she was nine months old when I started medical school. So um I learned though that so my my dad was um my dad had he was the third wife of my grandfather. So my grandfather was born in the 1800s.

SPEAKER_03: 1:02:11

Wow.

SPEAKER_06: 1:02:12

Yes, and um his first wife died, and he had five children um with that wife, um, and they had grown up and gone. His second wife divorced him, took all of his land.

SPEAKER_03: 1:02:24

Oh my god.

SPEAKER_06: 1:02:24

And um, her father was a banker, and then uh the third wife was um my dad's mom. Okay, and um, so she was much, much younger than my grandfather. My grandfather was in his 60s when my dad was born.

SPEAKER_01: 1:02:41

Wow.

SPEAKER_06: 1:02:42

Yeah. So I mean that's how it was like in those days. So um so my his half sibling um was there were physicians in his family. Actually, they're uh their group of physician gynecologists, actually. So I was in in uh I was in my hematology fellowship, and one of the sons of he so my um my grandfather and his great-grandfather were brothers, okay, right? So that's how we were related. And I like someone came to find that Dr. Nance and they found me, and I'm like, no, that's not me. And he, you know, and I'm like, hey, we're like cousins or something. And he's like, are you sure? And I'm like, yeah, you know, and so anyway, so that was kind of fun. That was kind of a fun, fun story. But when I decided to become a doctor, I actually didn't know that I came from a family of physicians. And my great-grandmother had been a nurse, and she organized a big nursing program in northern Utah and helped establish that up there. So I have medical people in my family. That's, you know, not a big stretch, but um still I was a woman in Utah, and women weren't usually slated for careers, let alone physician. Um, so I didn't have a ton of support from the community. And then when I got pregnant with Serena, because I didn't make it into med school the first time I applied, so I decided I was gonna get married and have kids. Good idea, but not the end of the road for me. So um I did get pregnant again with Serena while I was applying the second time. And I um interviewed six months pregnant, but I had already been pretty athletic, so you couldn't really tell with the zoo coat on. And then I delayed for a year. So she was nine months when I started med school.

SPEAKER_03: 1:04:36

Oh, wow.

SPEAKER_06: 1:04:36

And so I was kind of split between my intellectual needs and the biological needs of having a baby. And that was a challenge.

SPEAKER_03: 1:04:49

Not bad.

SPEAKER_06: 1:04:49

It was a challenge, but um, then I realized when I started watching those daycare women and how they would play with the babies versus how I was dealing with my child, and I I suddenly realized that not everyone can do what I do. Wow, and I cannot do what everyone else can do. I'm not great with early childhood. That's funny. But I'm great with adults, so it's good to read that. You know what I mean? Like, and that was a liberation for me. So can I, you know, can I spend that emotional energy in the clinic versus in in the you know, in the play playroom and on the floor with Legos. And I do love Legos. There's you know, yeah, there's no shortage of Legos in my house. Or dogs. Those two. And a lot of books. That's and a lot of puzzles. So but we have we have a lot of playtime too. But we also, you know, uh but medicine, yeah. Being able to interpret what's going on in my body and the sensations and being able to tell, you know, what's life-threatening and what isn't. Um, that has been really good for my mental health. So, you know, because you a lot of things go on in the body and you know, and not and when you don't know what the anatomy is, when you don't know what your tolerance is, you know, and I think in the bleeding disorder community, one of the most powerful things that we have been given are those PK studies. Right? Because that gives us an idea of when is the factor protecting us, right? And when is it wearing off.

SPEAKER_01: 1:06:27

Right.

SPEAKER_06: 1:06:28

And what tolerance do we have to do what we need to do or what we want to do. You know, and you know, so it's like it's the weekend, you're going out of town with your girlfriend. Are you gonna factor it before you go? Yes, you are, because you don't want to be slowed down if something fun happens.

SPEAKER_02: 1:06:44

Right.

SPEAKER_06: 1:06:45

You know what I mean? Or if something that you didn't expect happens, then you've got a window.

SPEAKER_02: 1:06:50

Yeah.

SPEAKER_06: 1:06:50

You've got a window to get that treated. And, you know, and so knowing those types of things and bringing that up in the clinic, you know, I think has helped open up a lot of doors. And so when I'm with patients and I'm helping them like learn about their bodies and interpret the signals of their bodies, and then practicing that type of conversation together, well, what are you gonna do? Like, you know, oh, you're going on a three-day camping trip. Okay. And are you gonna just take your factor with or are you gonna infuse before you go and take a dose, you know, and and having that opportunity to, you know, to have a conversation about how to use their treatment to the best ability? Um, I've had a lot of conversations with men with uh moderate hemophilia. Oh, I haven't needed factor before. Oh, but you're not going to the gym anymore. Why is that? Well, it hurts too much. And I'm like, oh, yeah. Well, why don't you just, you know, this factor, especially the hemophilia B patients, right? I'm like, you don't have any excuse. Once a week, once every two weeks. I'm like, come on. Yeah, right, right. It's no big deal. Right. Let's protect your body because you are only 40.

SPEAKER_01: 1:08:13

Right.

SPEAKER_06: 1:08:14

You know, I'm like, you are not going to be able to move in 10 more years, you know. I'm like, if you can't keep moving now. And so it's, you know, I mean, it is it is tricky, right, to move from, you know, like this transition for me, being a person with hemophilia, being a provider, being a mother, this is a fluid state for me. And it happens like all day through the day. So I can't really talk about any one of those aspects, right? Because it's just your whole life. It's my whole life. Actually, um, one of the things I like to talk about a little bit, I need to talk about is the fact that there's no holiday from hemophilia. You can't go on vacation from hemophilia, right? And and so, you know, so I know this. So the way I cope with it is to just do it really hard all the time. And so then if I'm reading a fantasy book or if I um I picked up pottery this spring, I don't know why I decided I need to do that, but here's the great thing about pottery is that you actually can't think about anything.

SPEAKER_03: 1:09:27

Oh wow.

SPEAKER_06: 1:09:28

You actually can't think about, you can't let your mind rift. If you do, the clay on that wheel is gone, right? So you actually have to only use your hands and feel the clay and feel your body in the clay.

SPEAKER_08: 1:09:42

Present in that moment, yeah.

SPEAKER_06: 1:09:44

Yeah. There's no thinking about anything else. As soon as I know my mind is wandered, I pull my hands off the clay. Yeah. And I let my mind wander for a bit and I take a drink of whatever my beverage is, and then I decide if I if I'm done doing clay for the day. So so there, so there are moments for me when I do not have hemophilia. But but um by and large, you know, that um the way that I cope with hemophilia is to tackle it.

SPEAKER_08: 1:10:12

Yeah. So so going back to parenting, you know, you have a son that has hemophilia, and in the process of this, you're going, you've got all this, you know, experience, lived experience, life experience of your own. And you've got now all this medical knowledge, and you're trying to learn through all of these things, and his journey's very different than your journey.

SPEAKER_06: 1:10:37

Oh man, it's so different.

SPEAKER_08: 1:10:39

And so some things are way easier in a sense, probably, but some things are like he's he's a different person than you are. So he doesn't he doesn't think about things in the same way that you you do. The things that interest you don't aren't are gonna interest him in the same way. So in terms of being a parent and learning how to raise a son with hemophilia and and all of the differences, like you can you can tell I keep avoiding this, right? Like I'm like shut up. I think it's important. Yeah, we it's important.

SPEAKER_06: 1:11:12

I mean, okay, so the one thing that that comes to mind is, you know, is is knowing how much I wanted to have children, right? Like always wanted to, always wanted to, always wanted to, terrified of it, and then was really, really, really angry about the um what do how do I say this? I I'm just gonna have to be really blunt about it, but like the disapproval in the community about people with hemophilia having children, and I'm not sure exactly where that came from. Is some of it came from the medical community because it's so bad and we didn't have treatment before. Um, but I think a lot of it comes from culturally the stigma of disease, period. So it just comes from all angles, but um, you know, I uh I knew there was at least a 50-50 chance that I would pass the hemophilio gene on to my child, and I I mean, quite frankly, did not have 60 grand to do any type of treatment um to select against the hemophilagene. And then also um egg harvest is really risky and even then I didn't, you know, I I didn't I didn't want to risk that. Um so uh, you know, so I'm like, well, we'll just see what happens. Is this a great way to do it? Yeah, it's the way it gets done. Right. It's the way it gets done most of the time.

SPEAKER_02: 1:12:54

Right.

SPEAKER_06: 1:12:55

And and so, you know, with Serena, I was pregnant before I went to medical school. And I remember, you know, being pregnant with my OB, and I had like this long list of questions, and I was so anxious, and I'm like, what about that? But I see, what about this? Blah, blah, blah. And um uh, and my doctor was so loving, and she just she looked at me and she's like, It'll be okay. And that, and you know, and we didn't even go through any of the questions. She's like, What would it be okay? You know, I I mean I'm like eight weeks pregnant or 12 weeks pregnant or something, and I'm freaking out. And um, and then with you know, with when I I wanted to have the two together, I wanted to have more than one because it just seems sad to have an only child, right? And they need a buddy. They need a buddy, and and sometimes there isn't an opportunity to get a buddy, you know, and that's okay, then that's fine. But you know, uh I I had hoped for that, and I but I was already in medical school and my previous husband had had a health condition, so um we knew it would be harder for him to, you know, c for me to conceive through him, and it seemed like Serena was a miracle anyway, and she was so perfect, and I wanted her so much. And um and then when Isaac showed up, and uh I wasn't expecting that, but it was a it was great news, it was good news. Um, but I was a third-year medical student, so it was harder to, you know, to figure out how that was gonna work. But um I got that, you know, the ultrasound that it was in the right place. And that, you know, that was a great because I, you know, I was like, oh my gosh, if I have an ectopic pregnancy, I'm gonna die, you know, like all of these terrible fears. So there was the the risk of passing it on. There was the burden of people with who are uh who have a hemophilia gene, there's all this pressure of whether or not they should have kids. And and honestly, kids happen when they happen. You know, a lot of that biological drive isn't even up to our brains. Right. Like our cognitive self, it's like overridden by our biological drives. And so, like, we're not even responsible for that. And you think that you are, you know, like you have control over all of the decisions that you make. And there's a partnership with our body, you know, it's not it's not all up to our cognitive selves to figure it out.

SPEAKER_08: 1:15:27

It's not the same thing as like choosing where you want to go for vacation. Like, I think people make it sometimes try to oversimplify the process, and you're like, no, it's actually something that the need to have children when it's present is overwhelming, right?

SPEAKER_00: 1:15:41

Wow.

SPEAKER_06: 1:15:42

And that doesn't come from anything other than our DNA. And so as I really came to understand this more later after I had Isaac, but really understanding how genes work and a little bit more about those uh those, you know, those built-in things, and I'm like understand my choices better. But you know, at the time, I'm like, well, pretty normal, stupid person that's like, well, it'll be okay. And it was, but it takes a lot of energy for it to be okay. Um yeah. So that's it. You just have to work at it and figure it out, right? But um uh so when you found out that it was gonna be a boy, boy. I just started crying. Yeah, I was like, okay, well, this kid has hemophilia. I knew that. Wow. And um, I didn't risk an amnio because I'm like, well, I I don't want to injure the kid, right? And I don't want to injure myself, and it's a high risk anyway. And I wasn't on regular factor then. Um, so uh yeah, so Isaac was born and it was traumatic because uh it was traumatic. I'm gonna leave it there. And uh and then they've given me narcotics instead of an epidural, and they and just right before he was delivered, so he was quiet at delivery. And um uh, you know, and and then uh they did the cord blood, the PTT of the cord blood, and they're like, oh, 83 seconds, and I was like, Oh, he has hemophilia, you know, and I was like, you know, I think I was even on the phone with my dad, you know, he's born and he has hemophilia, you know, and I'm sobbing. And um, you know, and uh the pediatrician was just, you know, because I met with her before and I was in the children's hospital, and I walked in the doors and I'm sobbing, and you know, and it was just like one of those things because yeah, I still can't go to the children's hospitals. I'm like, that is not my jam. But um uh she was, you know, she was really good. And it was that woman who held my hand and she's like, it's gonna be okay. And I I was more paranoid than anybody else. And so Isaac would only ever get hurt when I was around, right? And I don't know what was going on when nobody else was around because he was always fine. It was only when I was home that he would get hurt, right? And so I'm like, is this just me? You know, am I just being paranoid? So uh I mean that wasn't exclusively, but you know, very often it was mostly me being hyper-vigilant. And um, I I did ask for antidepressants right after he was born because I knew I needed a lot, and I had to revisit a lot of emotional trauma after he was born. And so um that was a hard time.

SPEAKER_05: 1:18:36

Yeah, but he's beautiful, yeah, and he belongs here, and he is amazing. He's amazing. He's amazing, and I told him that. I said I knew you could have this, but I really wanted to, and that was more important than hemophilia. And so he, you know, we have had a lot of conversations, he doesn't like hemophilia, and he says things to me like, I'm glad you're not alone, mom. I'm like, oh man, that's the best. You know, so yeah, we get through it together and we do infusions together, and he'll sometimes do mine and I sometimes do his, and he's gonna be a physical therapist.

SPEAKER_06: 1:19:19

That's his new toys and job. So that's awesome. Yeah, so I'm um uh I'm really excited for him because uh more than anything I want to take care of his body. Yeah, because taking care of your body means that you're not in a lot of pain or his lunch pain, right?

SPEAKER_08: 1:19:34

So yeah, and and that journey of like just just being so I mean, in so many ways, while you while you didn't want that hurt for him and that, you know, that that struggle for him, yeah, there had to be some sense of like like you were prepared to also walk it out from a from a technical point of view too. Like you had to feel a little bit equipped to be able to say, okay, we're gonna do this. And at some point there had to be a place where you're like, all right, we got this, right? When he was little, I mean, did you have a did you have like a a point where you're like, yeah, we're just gonna for sure.

SPEAKER_06: 1:20:13

But then you have a newborn baby whose forearm is the size of your husband's index finger. And you're like, wow, I'm supposed to find a vein to infuse this thing. Yeah, you know, and he was born in 2004, and if you remember, they weren't really starting prophylaxis in this country until like 2008. That's when that paper was published. So, and I'm like, I knew the studies that had been done in Europe that they were putting babies on prophylaxis, and I'm like, I want Isaac to have prophylaxis, and they're like, Okay, we can start with once a week, you know? And um, so yeah, so you know, I mean there were there were you know hurdles, there were things and lots of conversations, and as a parent, you have to harden your heart against their tears because you know they have to have that factor. Yeah, and when you have hemophilia and you know what it feels like to sit on that couch and not be able to move for a week and not be able to sleep for three days because you cannot get away from that pain. And you're like, that is not gonna happen, you know, it's not gonna happen.

SPEAKER_08: 1:21:39

And so, yeah, there was a bit, there was like yeah, there was vigilance that you're just like, this is But there was that steel rod that was not flexible when it came to this.

SPEAKER_06: 1:21:54

You want to go over to to sleep over at your friend's house? This is what we're doing. He you we sat in the car one time for like maybe three hours because Isaac didn't want to get his infusion. All four of us, Alex, Serena, me, Isaac. The numbing cream had worn off.

SPEAKER_07: 1:22:15

Oh my gosh.

SPEAKER_06: 1:22:17

And he was terrified of the needle and he didn't want it. And wow, you know, and and he's like maybe six at this six, seven. So you can't force him and you can't hold him down. Right. He has to, he, he has to relent.

SPEAKER_01: 1:22:32

Yeah, right? Right.

SPEAKER_06: 1:22:34

He has to give permission, right?

SPEAKER_01: 1:22:36

Right.

SPEAKER_06: 1:22:36

So yeah, that was a long day. And then um he realized that he'd had infusions there so many times it didn't hurt anymore. Oh man, that was a great day, right? And then we didn't have to do the whole messy emlet cream thing anymore.

SPEAKER_08: 1:22:55

Yeah.

SPEAKER_06: 1:22:56

But oh boy.

SPEAKER_08: 1:22:58

So many. Yeah, so anyway, so we should take a break. Yeah, question for you though. I get this all the time. Is it harder to be the patient or the parent?

SPEAKER_06: 1:23:08

It's harder to be the patient for me. Because I'm living in my body and he's responsible for his body now.

SPEAKER_07: 1:23:17

Yeah, yeah.

SPEAKER_06: 1:23:19

Yeah, I I do think that Because his experience is not mine. Okay.

SPEAKER_07: 1:23:24

Yeah, yeah.

SPEAKER_06: 1:23:25

I was alone and nobody believed me.

unknown: 1:23:28

Yeah.

SPEAKER_06: 1:23:29

And I didn't have factor. So yeah, I feel bad for my younger self. And I feel bad for those physicians who didn't know what to do to treat me. And I feel bad for my parents. I feel bad for my older brother and sister and my younger brothers because they watched me suffer and they couldn't help. And they didn't even know what was wrong with me. But they were still helpless and couldn't fix that. My older brother talked to me about how angry he was about that. And I had never thought about it from his perspective until he brought that up, you know? And how it affects the entire family.

SPEAKER_08: 1:24:04

When you see today, looking at the landscape of how patients are being treated in hemophilia broadly today, and you see how there's still a pretty big gap between how men are treated versus how women are treated generically speaking. Do you feel like that there's still some uh lack of urgency and lack of you you feel like some of what you experience is still going on today in the clinic setting as it pertains to women with bleeding disorders?

SPEAKER_06: 1:24:33

Oh my goodness. You do not even need to answer ask that question. That's why we're here.

SPEAKER_01: 1:24:39

Right.

SPEAKER_06: 1:24:40

Oh, let's see. So gosh. Uh, you know, I've done a lot of thinking about how to what is still happening and how can we fix it. So part of it is training physicians to think about symptoms. And but I, you know, again, it does kind of confuse me a little bit, right? Because the physicians who've cared for me when I've talked to them about what's happening to me, when I actually tell them they really want to help, you know, and so like could I have had prophylaxis sooner? Yeah, I'm sure I could have. I could have asked for it. Why didn't I? You know, why did it take my husband to ask for me? Why didn't I? You know, and so I don't know the answer to that. I don't know if I didn't feel like I was worthy enough or because I didn't have low enough factor levels. Um, but you know, and and also I do know why some physicians don't offer factor, and that's because it's really freaking hard to give factor to some women, right? Their veins are tiny, they're hard to cannulate. You, you know, you little you got little boys with their skinny little arms, you can see those veins, right? They're right there in front of you. But a woman has 14 or more body fat than men, the veins are harder to see, they aren't as big vascular-wise. It's a big challenge to train a 30-year-old woman how to get a factor infusion. So there are logistics to getting factor into women, okay? These are things I didn't expect. And probably other people who came before me realize how difficult. And then, of course, you know, I inject myself with factors, so it's not that big of a deal. You get used to it, right? I know this, but if most physicians do not have that same experience, you know, they also don't know, like so. I knew a guy who was a heroin addict, right? And this what you know I don't I've had delauded, so I've had an IV push-up delauded. I know what that feels like, right? That's that's medical grade heroin. So fentanyl, morphine, all of that is medical grade heroin, right? I mean, that's what that is. So all narcotics are the equivalent of hero. If you ask me, do I want a dose of factor or do I want a dose of delauded, sign me up there for the factor, right? I know that's gonna make that pain go away. Yeah, delauded doesn't. So sickle cell anemia, right? Patient comes into the hospital, they get delauded, they get their pain medication, their pain goes away. But the sickle cell crisis doesn't. But but actually nobody talked to them about the delauded did not change the sickle cell, it only covered up the pain. It made you not care about what was happening in your body until it solved itself, it resolved itself with rest and IV antibiotics and fluids, and you know what I'm saying? Like the delauded did not stop the sickle cell. And actually, some sickle cell patients are like you can see the dawning of understanding in their eyes when they realize that they are not connected. The delauded did not stop the sickle cell crisis. And so patients are coming into the ER thinking the delauded is gonna stop that pain crisis. And the ER doc knows that that's not the case. That, you know, it's not gonna do anything for the sickle cell crisis, it's just gonna stop the pain. But there's a disconnect between what the physician knows and what the patient knows. And this is the big problem between what patients experience and what physicians experience. And we talk a lot more now about the patient experience, and there's even training going on at Banner, mandatory training, to help providers improve the physics the patient experience. And that means that a physician reflects what the patient said. So the patient is sure the physician heard them. The physician heard them, processed it, and already created a treatment plan before they finished their sentence. Right. Because we've heard this from like how many other patients? And so but it doesn't matter what the physician knows, it only matters what the person experiences.

SPEAKER_08: 1:29:25

Interesting.

SPEAKER_06: 1:29:26

And so there has to be a multi-pronged approach where the physician is trained to recognize the symptom, trained to recognize the language the patient is using, because it might be way different than what, right? And then also, like a lot of women will go in and say, but I'm having this pain to their physician. And they think they're having a bleed, but they don't know. And um and the physician's like, well, that's well, you can possibly be having a bleed because your factor levels are 30%. So they just dismiss that pain out of hand as being an actual. Bleed. But we now know that you can have uh leakiness of blood vessels when factor levels are low. And we used to call these microbleeds, but they aren't microbleeds. What they really are is ragged, is a ragged capillary bed, a leaky capillary bed. So you have where that inflammation was or that bleed was way back when it isn't bleeding. There's no blood in the joint, but there's fluid. And the fluid hurts. The fluid is stretching those nerve endings and making it so they can't function well. And so I I know that regular prophylaxis helps seal up those capillary leaks. Estrogen therapy helps seal up those capillary leaks. So uh now the treatment should be a little bit more focused on well, what's causing the capillary leaking and what fixes capillary leaking because that's where the pain is in bleeding disorders. Now we're not talking about sickle cell patients today, but they're chronic pain patients. And so they have a lot of similarities in understanding where the problem really is.

SPEAKER_08: 1:31:04

But pain management starts with addressing the root cause problem. And and so often I think even for women, we we hear women report regularly that they were just taking, you know. Oh, we we hear people talking about taking Tylenol, we hear them talking about taking Advil, and and they don't they're not putting two and two together to realize that in some cases they may be making the problem worse, even because they're taking this Advil now, and it's you know, it's causing them to even potentially bleed even more, um, you know, or have additional problems. And I think, you know, it's it's you're exactly right. There's a disconnect sometimes between even the explanation of what I'm experiencing in my body and the and then the treater and the and the provider looking at it and going, okay, well, you know, unless you say those, some of those scientific references and in your explanation, you know, people, you know, how many times we've heard people say things like, Yeah, you know, just my my grandma had arthritis, my, you know, my my dad had arthritis, I have arthritis. You know, it just it just runs in the family. Well, you've you even within yourself, you've d dismissed bringing that up in the clinic visit because that's just something that you've always just know, oh yeah, yeah. In my family, we just have long, heavy cycles. That's just everybody has, you know, very heavy menstruation. That's just the way my family is. And so they don't think to bring that up in the clinic unless that's being asked or pursued. But I do sense that there is a sense of like apprehension and and to to even pursue some of those questions from the parietal level sometimes, because and and and I think it's a litany of reasons. I think sometimes it's because it's difficult to even convince the insurance formulary. You can you can have a come to an agreement in the clinic visit, but you write that script, and then the next thing you get is just this massive insurance battle that sometimes you can't overcome. And so then what, you know, if you have a 30% level or maybe a 35%, could you benefit? Probably. But is there a is there a point, you know, I know, I know for one of my daughters, for instance, it was unfortunate, but we had we had gone over and over and over and over and over and over again to try to get, you know, her treatment and observing all of these bleeds, her ankles would look the same size as mine. And and she, it wasn't until they did ultrasound and realized that she was bone on bone, completely deteriorated cartilage in one of her ankles. And it and it initiated, we knew it initiated from a major injury.

SPEAKER_06: 1:33:26

If you put joint bleed in there, then the insurance company will cover it. Right. But you gotta put joint bleed. And yeah, I I yeah, well, what are you doing that for? Joint bleed? Right. Oh, okay. And how do you document a joint bleed? Some type of imaging, right? Yeah. So it either needs to be an MRI or a CT scan. And and so what I like to tell women is okay, uh, how do you get yourself organized? If you only have 15 or 20 minutes, then how are you gonna get the most out of your visit? Right. So uh number one, bring a list, right? Bring your list and bring a list of all the times when you think you've had bleeds. So you don't have to go through the story of each one and how you were feeling, what you were wearing, and what the face of the moon was, because Dr. So-and-so doesn't care, right? Only wants to know what the symptoms were and if something made him better or worse, right? What was the body part? What were the symptoms and what made him better or worse? That's it. That's the whole thing. That's all they want to know. And so uh, so we don't want good storytelling in the clinic. We want just a list of facts because those lists of facts are how we're gonna list in our note and we're gonna say patient had this symptom there then and this symptom then. And the other thing is if a boy has two bleeds in a year, that's enough to justify prophylaxis. Well, if a girl has 12 periods in a year, why isn't that a cause for prophylaxis? Why doesn't that justify prophylaxis? That's 12 bleeds.

SPEAKER_01: 1:34:56

Wow. Right?

SPEAKER_06: 1:34:57

Like maybe she's missing three days of school or work. You know, why doesn't that justify factor?

SPEAKER_01: 1:35:05

Right.

SPEAKER_06: 1:35:05

Yeah. So, and then she has the swelling here and there too. So if two bleeds a year is enough to justify prophylaxis for a boy, two bleeds a year is enough to prophyla to justify prophylaxis for a girl. But you got to document what it is you're doing and why. And then the other thing is is decreasing the stigma about how hard it is to get infusions, what do you need to do? Well, factor's expensive enough that a home nurse comes with it, doctor. So send the home nursing order and make the home nurse go out there and administer that factor and leave the peripheral IV in.

SPEAKER_07: 1:35:42

Yeah. Yeah.

SPEAKER_06: 1:35:43

And the woman can give herself another dose of factor. One dose of factor is never enough. Whose idea was that? Right? I actually had a whole long conversation and I keep on doing this, and I see more and more people understanding this, like uh a mild hemophilic patient gets a dose or two of a factor, and um, and then um for a procedure or whatever, and then you proceed to ask them, how long did it take you to heal? Three months. Three months? What? That's not right. These are these are hemophilia treaters that have been taking care of bleeding disorders for 30 years, right? These are not novices, but they never asked that question, and they had no idea. You can't treat hemophilia for two doses.

SPEAKER_07: 1:36:33

Come on.

SPEAKER_06: 1:36:34

You can't. If you have someone with severe hemophilia, they're gonna get a couple extra doses, and then they're going right back on profile. You know what I'm saying? Like, same with mild hemophilia. You need consistent levels that are gonna go throughout the duration of treatment. And they're like, Do I really need all this factor? Do you really want to heal? Yes, you need all that factor, right? Right. Like I have a beautiful 22-year-old, 22, 23, I don't know. And he's uh he's been on heme Libra, right? Loves the medication, but he's been playing sports, and uh every time he goes and plays sports, gets some swelling in his ankle, a little bit of, he'll do a dose of his standard half-life factor, and um, you know, and it'll get better. But uh, and then every time he goes back out to play, repain, it hurts, right? And so, you know, you look at his ankle, compare it to the other side, and I'm like, well, did you notice there's some swelling here? He's like, No, I didn't really notice that. And I was like, Oh, look, it's not moving quite as much as the other one now, is it? And he's like, No. And I'm like, okay, if we're gonna fix this, then we need to fix it, and we need to fix it hard for a period of time because it's either gonna get fixed now or it's never gonna get fixed. So, like he's on a four-week prophylaxis program because that's chronic cinnovitis, and it's gonna take some time to heal. And he can't, and he shouldn't, be off walking. He's not gonna pay play that particular sport, he is gonna take it easy. Thankfully, it's summer and he's not in college right now, so he can take the time off to do this, but he looked at me like, what? This is a lot of factor. And I'm like, it's a lot of factor. This is what it takes. If you really want to fix this, this is what it takes. And you know, so even with the hemebra, we have to be really thinking about what does it really take to solve that joint problem? And honestly, it is a huge amount of effort. Um, so it's it's just it's way easier to prevent those bleeds than fix them.

SPEAKER_08: 1:38:43

Well, the alternative is also like you said, like permanent damage or you know, potentially surgery down the road. Rapid progression. Rapid progression. Like it just goes away.

SPEAKER_06: 1:38:52

No, we can but we can make a big improvement where we're totally interrupting the rapid uh dissolution of that joint, like what your daughter had, right? Because that bad injury and then just continual chronic bleeding, like it just never got better after. Yeah, I know exactly.

SPEAKER_08: 1:39:11

We I had a um uh one time I was painting my hallway in my in my house, and we live in a whole old house, and it was I was painting it. And uh it was like a it was like a long day. I was just doing it for I was trying to get it done for like probably family visiting in town or something. And so I'm like painting away. And so for for for like uh and my right arm, I've had uh repla I've had an elbow replacement. There are actually three, which is not a fun story. But but um but my so my my left arm is my strong arm. So here I am up above my head, like all day painting for like 14 hours or something crazy like that. And so anyway, somehow or another, I just strained the muscle in my back somehow in just a certain way that it just started swelling and it just never got better. I mean, so like two days, three days later, I'm like, I'm I'm I'm at a point where I'm debilitated. I can't move. I'm like in tons of pain. In my own, now here I am at I don't know how old I was at the time, maybe 40. And I'm thinking like, I, you know, I am not putting two and two together. I'm still thinking this is just old man syndrome. This is this can't possibly be related because I don't have muscle bleeds that often because I do treat prophylactively. Yeah. I wasn't off my schedule, you know, knock on wood. But I I was, you know, I I'm I so I'm thinking this can't, I'm treating, uh yes, I did a lot of activity, but it's probably just I just pulled a muscle or it's just a sore muscle.

SPEAKER_01: 1:40:34

Yeah.

SPEAKER_08: 1:40:35

Well, I go to my, you know, uh, I finally I I I call the treatment center because I'm like, I may need a couple extra doses because I might, I don't know, like this maybe this is something I should be concerned about. Because after four days and this is still like really throbbing and I can't sleep at night and all this stuff. Anyway, so they're like, come on in, let's let's look at you, do a you know, work up. And so anyway, I remember the doctor looked at me and she was like, listen, Jonathan, she goes, she goes, you're gonna have to get really aggressive with this, and you're gonna have to trade. I don't remember what the exact dosing was, but it was like it was something like what you referenced, like, you know, every day for this many days, and I want you on complete bed rest for the next three days. And I'm thinking, I've got a business trip and a thing, and I can't slow down, and this is like a Monday, and I need to by Wednesday. I'm like, there's no way I can't possibly take three days off to like slow my life down to address this. And maybe I can take the medicine, but I don't, I just can't put my life on hold for this, you know. And uh, and I'm I'm thinking all this in my head while she's talking. And so finally I'm like, I look, I if I'm just being really honest, like I can't take three days of bed rest. Like, I just don't have the time. And she says, Okay, fine. I will admit you into this hospital and force you to be down on bed rest on bed rest. Yeah. And she she's like, I will force you to be on bed rest in the hospital if you don't just if you don't go home. And so I was like, okay, fine, fine, fine, okay, fine. I'll go home and I'll be on bed rest and I'm gonna infuse and all this stuff. And and she goes, and I'm walking out of the clinic. She goes, I'm calling Carla. If you don't do this, I'm calling her before you get home. She's Carla's gonna make certain that you get on bed rest. Well, I did, and and you know, over those three or four days, all of a sudden it starts to improve significantly in just in in just just a few days. And I really was on bed rest and I listened, which is hard to get me to do sometimes. But even for me, I still am not putting two and two together to go, this is a this is a muscle bleed, you know. And she's like, no, this is absolutely a muscle bleed, and here's what we're gonna do to fix it. And I look back on that time and I think, man, that if I had not gotten that aggressive about doing that specific treatment regimen, you know, like that, there's a good chance that that could have continued to be a problem for a long time. And yeah, I'm so grateful, but but in that moment, I was like, uh here I am at 40 years old, lived with hemophilia my whole life, gone through all these surgeries, all this stuff. And even for me, I'm still not asking the right questions or even thinking that this is the problem, even when the solution's presented to me. And it makes me think so often about I I think this is broadly across the whole community, but especially for uh uh women who have been told for decades that, you know, really all forever, that you you can't have this. It's just you might can be a carrier. You you're you're gonna be a carrier, but you if you're a carrier, you're you're you it's a rare possibility you might have symptom. Well, yeah, that's that's just we've learned too much now. We know too much. And so now being able to change the language, even in our own minds, and saying, hey, you know that that menstrual cycle that you have that lasts 10 days, like that's that's probably something you should think of in context of you have a genetic mutation. And if you can put those two things together mentally, maybe, maybe you can start having a conversation with your provider that's more in the in the area of like, hey, I think this might help me. And and then you start realizing, oh, I had a sprained ankle, and it took me three months to recover from it. Well, that's not normal, you know. Like there's there's probably a need for treatment there.

SPEAKER_06: 1:44:11

Yeah. Um so you had some questions for me beforehand. And I want to make sure there's one I want to make sure that we answer. Uh so um so when it comes to women in hemophilia, there okay, there are two big things. Number one, when I was in my 20s before medical school, there was a conference. The National Hemophilia Foundation had um done some focus groups to figure out is there really a problem? Do women bleeding have bleeding disorders, right? So this is in the early 90s. So um they determined yes, there was. And um, and there was limited amount of funding. And the von Millebrand disease had been almost uh completely unknown. There were hardly there was hardly any literature about it, there were no programs for it, uh, nothing, nothing for von Millebrand's disease. And so um group of physicians, group of patients. I uh was in that council. I voted that we shouldn't leave hemophilia A and B behind, but they said we only have this much money, we have to make a choice. Von Willebrand's as far more than hemophilia carriers, and the hemophilia carriers are already kind of in the clinic, so we're going to focus on von Willebrand's disease. So that was Project Red Flag, and it was all about von Willebrand disease and increasing physician awareness in Obigayne offices, blah, blah, blah. So, so that effort primed the medical community for the rest of the bleeding disorders, right? And so uh, but hemophilia A and B and women was specifically not included because they didn't feel like they had enough resources in order to just pack that on along with it to figure it out. Well, I mean, I was still in medical school, so I didn't, you know, I didn't even know what I was talking about, or I had just started medical school, I don't remember, but I and I had a new baby, and you know, I had a lot on my plate. So I stopped going to the bleeding disorders. I wasn't heavily involved in bleeding disorders work at the time, a little bit here and there, but not consistently. Um gosh, let's see. So uh roll time forward 20 years and um I mean I even I have these old slides. I have this old uh what was it? It was it wasn't hemoware. Was it hemoware even back then in the 80s and 90s?

SPEAKER_08: 1:46:54

I think in the 90s.

SPEAKER_06: 1:46:55

Yeah, there was uh there was a hemorrhage. I have a copy of this magazine at home. I saved it and it has this big picture on it. One of my friends is actually on the cover of it. And um it says women and hemophilia or something like that. And I was so excited about this, right? Because I'm like 18 or something. I was seeing this and oh my gosh, women and hemophilia. And I open up this magazine and it's about caregivers.

SPEAKER_07: 1:47:20

Oh wow.

SPEAKER_06: 1:47:21

Mothers, wives. I was so mad.

unknown: 1:47:26

Oh.

SPEAKER_06: 1:47:26

Right? And then and this isn't the only time. So um I'm like what, 17, maybe, uh somewhere in high school, junior, sophomore, junior, senior, I don't know, somewhere in there. I wasn't a senior yet, but I had been to the hemophilia clinic at the University of Utah, and they gave me this whole binder, right? It was a an HTC clinic visit. I met with the geneticist, I met with the psychologist, I met with the, you know, uh, the hematologist, they're great guy. Um, it was Dr. Bibee. He's he was before George Rogers, who's a wonderful man. Anyway, um, so before George Rogers and um uh and had my first HTC visit, and um, and I get this whole big fat binder. It's like this huge three-ring binder, a bleeding disorder, care and management of hemophilia, right? Zero information in that binder about a girl with hemophilia. I was pissed, right? And so uh so this problem has been around, but as I was in medical school and doing research, and then during my fellowship at the um Bloodworks Northwest, it wasn't called that at the time, but I did a two-year fellowship with them to learn about hemophilia care. And during that time, I started doing research about well, like has there been anything else written about women with hemophilia? And there has. There have been case reports about women who have sons with hemophilia who had low factor levels that had nearly died from hemorrhaging. They've written as far back as like 1916 in the medical literature. So these bleeding symptoms in women, they've been known forever. They're the knowledge has always been around. So why hasn't it been paid attention to?

SPEAKER_01: 1:49:20

Right.

SPEAKER_06: 1:49:20

And uh I can come up with a lot of different reasons, but the truth of the matter is, you know, I don't know, but now is the time. There are studies out there that show that women have uh deterioration of their joints even if they don't have symptoms the same as men. Um, you know, we know if a if a man with a factor level of 30% gets a surgery, he's gonna bleed. Why wouldn't a woman with a factor level of 30% get a bleed, you know, get a bleed, right? I did a project during my hematology fellowship where I asked women who were known caries who had been genetically sequenced either because of their sons or for other reasons. Um and I went through and all of them with genotypes and I asked them their bleeding symptoms. Well, even if they'd never had any other bleeding symptoms, eight out of 10, 80% had at least heavy menstrual bleeding. And if they really had factor levels above 80%, because I wasn't sure, I'm like, oh, everyone who's a carrier is gonna have some bleeding symptoms. No, if they have factor levels above 80%, they have zero bleeding symptoms. Like they do not bleed at all. And, you know, and I'm like, okay, yeah. And then there are these women who have levels between about 40 percent, 40 to 5 to 60 percent, and you have a really variable phenotype. Either you can have bleeding symptoms or you don't, and it probably depends on what else your body is made of. Um so uh, and we know as we've looked into coagulation that there are a lot of modifiers to bleeding disorders. So if you're somebody who takes ibuprofen regularly for whatever creaky reason, you're probably gonna have more bleeding symptoms. Um if you have a variation of aler standos, you're definitely gonna have more bleeding symptoms. Sometimes you can have a myelplat disorder because they're really common, and you're gonna have more bleeding symptoms. And so there are lots of reasons why one woman is gonna have a different phenotype outside of just the special way the genetic material is distributed on the X chromosome. There's another deeper problem, and that is that when uh at least when I was in medical school, and I don't know if they're teaching it better now because I haven't asked, but X chromosome inactivation, which happens very early when a when a two like an X egg and an X sperm meet, and uh and that fertilization event occurs. As that egg is dividing, at about, you know, it divides, and then there are two, and then four, sixteen, thirty, two, sixty-four, somewhere in there, one or the other X. But before that is even more than a ball of cells, those cells are making a decision which X is gonna be on and which one is gonna be condensed for the lifetime of the woman. And each cell is a different, is it's gonna be different, right? So uh so that it's not like all of one and all the other, right? Mother Nature is gonna use every opportunity to give that woman genetic diversity, right? So on average, half of the X chromosome she got from mom is turned on, and on average, half of the genetic material on the X she got from dad is gonna be turned on, but it can be either 10% of one and 90% of the other, or 30-70, or 40-60. But that event is unique in each woman, and it's that event which determines in part how much factor she has. And so if she has 20% of factor eight, she's gonna bleed more. If she has 80% of factor eight, she's gonna bleed less. So you have to think about each woman in a family as their own person and they and their own risk of bleeding. And that's confusing to a physician, you know. Like you have to go through a lot of mental training and a lot of physiology to come up with that. And I, you know, I mean, I was given the opportunity over several years, right? This was my constant focus. Why? Why do physicians not understand this? That X chromosome and activation information that was discovered by a woman in in England in the 50s, Mary Lyon, and her lab director, like every other lab director at the time, stole her work, taught it wrong. Taught it wrong. It when I went back and saw the studies that she published, she published exactly that. She described it beautifully. And it and then her mentor took her research and interpreted it differently than how she presented it. Like the way I read it, I was like, oh, this is simple, this makes sense, right? And then taught it wrong. So generations of physicians got an incomplete idea of what that elegant work that Mary Lyon published back in the late 50s. So the problem is on so many levels women's health hasn't been addressed and still isn't and doesn't have a friend in the current administration. Factor's hard to administer. It takes a lot of patience, and it's harder to do in women than it is in men. It's expensive. For a while it wasn't even safe. Like, there's a lot of reason why. Yeah. Oh gosh, and then, oh, should we be giving factor around the time of delivery? Well, yes, we should. Oh, but women get clots from lines. I've had heated arguments with providers within this past year about putting a line in a woman with a bleeding disorder to administer her factor because she's gonna need it every six to eight hours post-delivery, and doing that by a peripheral vein at home with a squalling infant at her breast is not gonna be easy without a line.

SPEAKER_01: 1:55:44

Right.

SPEAKER_06: 1:55:45

You know, and this guy's like, I can't put in a line, I'm not sending her home with a line, she's gonna get a clot. And I'm like, oh my gosh. She doesn't need factor for two weeks. I'm like, wait, wait. Young OB kind physician. Right, right. Why are you arguing with me? And I'm blown away in my head. I'm like, what did I do wrong as a woman where this young guy is arguing with me about the duration of factor therapy for this woman who is documented, almost died from postpartum hemorrhage. Why is this young guy why is he arguing with me about the duration of factor?

SPEAKER_01: 1:56:25

I'm like, right.

SPEAKER_06: 1:56:27

How does he even have the nerve to tell me how much factor this woman needs postpartum?

SPEAKER_01: 1:56:33

Right. Right?

SPEAKER_06: 1:56:34

You know, I'm like, you just met this woman. I've known her for a year and a half, right? I've been treating her periods for five days of factor every month. And you think she's gonna get through delivery with three days of factor?

unknown: 1:56:46

Wow.

SPEAKER_06: 1:56:46

I'm like, where do you get off? You know, and I I mean I was so taken aback by that. I was really, really unprepared for that. And um, I actually had to go to counseling over that to figure out how to get over that because I I really was mentally unprepared for a young man to challenge my authority, where I have more authority than anyone I know in the West, and there's no one else I know in Arizona except for a couple of physicians at Phoenix Children's Hospital who know more about treating bleeding disorders than me. And not just because my personal experience, but because I spent a couple years in a coagulation lab, a couple years doing research and the hematology fellowship, and I didn't get troubled by anything else. I was really really focused about the mission is to get physicians work into the bodies of patients.

SPEAKER_08: 1:57:44

So you know, I I hate to say this, but um, I do hear this a lot often from from the community members that there's this sense of like, well, if I'd gone, I know I'm not, you know, a physician, but here I am trying to explain my symptoms, and I don't feel like I'm in the emergency room and they're just not listening to me. And it's like if I was just only a physician, maybe then they would listen to me. And um, you know, I know it doesn't help the situation at all, but it it does, you know, it's sort of like as a as a person who has had to advocate for himself in those emergency moments, and you feel like you're just not being heard, like it, it's both shocking and a little bit like, you know, um uh comforting is not the right word, but it's it's it's shocking, but also like like surprising in a sense that you you are facing uphill. Yeah, it's affirming that like you also even at the highest level degree physician that you most expert, most experienced, and you still can't get through to some of these other barriers. And I really believe that it's gonna take a multi-pronged approach to be able to change the narrative for women in general to be able to get the treatment that's needed. I I do think that it's probably gonna start with the you know, the the the textbooks and the discussions that are happening in school. I think it's gonna ha have to change from the research that's being published.

SPEAKER_06: 1:59:05

I think it's gonna have to do Oh gosh, there's a ton of research.

SPEAKER_08: 1:59:08

Really?

SPEAKER_06: 1:59:09

Yeah. We uh with Fair Time for Women, yeah. We went through and we pulled. There are like a hundred articles about bleeding symptoms in women. So what we need to do is we need to start talking about those. Yes. We need to print all those out and we need to send those to any woman's home and say, take this to your doctor's office with you. Yeah. You know, I and and you know, so you know, I know we've been at this for a little while here. And so uh so a couple of the take home messages that I would have for women is um is is the first thing is ask for an image. Okay. An image is worth a thousand words.

SPEAKER_08: 1:59:52

Like an ultrasound. An ultrasound, a CT scan. Yeah, yeah.

SPEAKER_06: 1:59:56

If a doctor said, if you say I'm having pain and I'm worried it bleed, it's A bleed, and the doctor says, Oh no, that can't be a bleed. Then um then ask, Well, what is it then? It's disrupting my life. If it's not a bleed, can you help me figure out what this is? Because it's disrupting my life. It's disrupting my life. I can't wash my dishes because of this. I can't go to work because of this. I can't, I can't perform my responsibilities because of this. You have to follow that up with it's not just pain, it's interfering with my life. It's interfering with my ability to perform my duties. So it's really, it's it's it's it's being curious. Why do you think this isn't interfering with my life? Right. These are people who delayed gratification over and over and over again to be in the physician's seat. They want to help. They want to be liked. Physicians want to be liked. They want to have your confidence. And they get shook when you don't believe, when you're not confident in their opinion, right? That does disturb them. Well, we need to, we need to allow our voice to be heard, and we need to be confident ourselves that what we're experiencing deserves to be explored. Well, if it's not a bleed, what is it?

SPEAKER_02: 2:01:20

Okay.

SPEAKER_06: 2:01:21

Last story for you. 15-year-old, dad has severe hemophilia. She's a, you know, she's a symptomatic carrier. She has mild hemophilia A. So we can use whatever terminology somebody else, like symptomatic carrier, carrier with symptoms, manifesting carrier, hemizygote, person with hemophilia, girl with hemophilia, woman with hemophilia, gender neutral person with hemophilia. Doesn't matter.

SPEAKER_01: 2:01:49

Right.

SPEAKER_06: 2:01:49

Pick your term.

SPEAKER_01: 2:01:50

Right.

SPEAKER_06: 2:01:50

Whatever that person understands, we'll use that because we can just build with that. Okay. Right. Like we don't have to change any language as long as someone has at least a beginning. Okay. So 15-year-old comes in and she's got foot pain. Both feet or ankles and her ankles hurt. Okay. Um factor levels about 30%, 25%, whatever. Well, her feet hurt. Okay. Could that be bleeding? Could be bleeding. But what did we do? We did imaging. What does she have? Flat feet. That's why her ankles and her feet hurt. Not because of bleeding. And then she was B12 deficient. Um, she was vitamin D deficient. She was iron deficient. So we put her on Heme Libra because she also had a very well, she tried factor for her periods, and it was taking seven needle sticks to get a dose of factor for her. Okay. This is her grandmother's experience at infusing. Her father's an expert. Okay. They couldn't get her veins, right? She's having 12 bleeds a year. We put her on Heen Libra. When I first met this girl, she barely looked at me and would not talk. She let her dad say everything for her. Okay. Oh, and then and then we got her appropriate footwear.

SPEAKER_02: 2:03:17

So her feet stopped hurting.

SPEAKER_06: 2:03:20

And the B12 deficiency actually helped her nerve endings to recover. So that that pain in her legs and her feet was actually in part from needing orthotic footwear supporting her arches, but also from the B12 deficiency in her nerves, nerves hurting. So she wasn't having bleeds. But she was having heavy periods. And so for that, she got healibra because when you bleed for 12 days, that's just how can you have a normal social life?

SPEAKER_01: 2:03:52

Right.

SPEAKER_06: 2:03:52

You know? You can't.

SPEAKER_01: 2:03:55

Right.

SPEAKER_06: 2:03:55

Right. So uh in a factor level, like 30%. Is she supposed to have bleeding heavy periods like that? No. But she is. Okay, so she does. So heen Libra. Roll time for I see her six months later. This time in the clinic, she's looking at me. She'll answer some questions. Her dad doesn't have to do all of the talking. Next time I see her in the clinic, she's playing sports. The depression lives. She's more interactive. You know, factor therapy changes families. It changes lives. It changes families. Whatever it is. You know, if heme labor is an option, I put her the mother, her uh, oh, one stage factor level 50%, chromogenic factor level 10%. I put that lady on factor therapy. Yes. I put that lady on, she's 70, right? So dad, daughter, grandmother, right? So uh or his mother, his mother, his mother. Um she so so part of the issue was that we didn't do the right assay, but she's on, so she's 70. She's on heme libra.

SPEAKER_01: 2:05:19

Wow.

SPEAKER_06: 2:05:20

Okay, she's still a school teacher. She's still teaching school, right? Yeah, she's a fifth grade teacher. Do I want to keep that lady at work? Yeah, because there aren't enough teachers. Right. Heme Libra is allowing her to stay at work, right? Because this was 67. She was gonna retire. And the reason why she came is because her knees were hurting so much, and she was complaining every day. And her son dragged her butt in. Mom, mom, can you take care of my mother? You know? So then I, okay, so she's been on treatment for a while. And I saw her a couple months ago, and she's like, Do I really need this peen libra? Do I really need it?

SPEAKER_02: 2:06:02

And I just feel good.

SPEAKER_06: 2:06:05

I feel really good. And I was like, Well, remember, remember when you first came to see me and your back hurt and your knees hurt. Yeah. And that's when we that's why we started the medication. Do you remember that? Because this is a couple years ago now, right? I remember because I'm wounded in her head. Like, and I'm justifying why, you know, register needs to pay for this, and this is why, right? And so, you know, and and she's like, She's like, oh yeah, that's right. You know, and I'm like, yeah, yeah. And I I see that you're also wearing tennis shoes and not flip-flops anymore. Remember, why did we start this show?

SPEAKER_01: 2:06:36

Right, right, right.

SPEAKER_06: 2:06:38

Oh yeah, that's right.

SPEAKER_01: 2:06:39

Yeah, that's right.

SPEAKER_06: 2:06:40

Yeah, that's right. I remember I don't wear those shoes anymore either, do I? You know, so it's always, you know, it's always like I have a little bit more time. Yeah. Right. I am allowed that at my work environment. I am so grateful for that. And I often talk to my leaders about how grateful I am that they're creating that space for me. And, you know, they're doing it because 30% of the referrals to the cancer center are for non-cancer reasons, and that's why I'm there and I see those part of those referrals. But the exchanges that I also get to take care of bleeding disorder patients. And even though the patient visits went up from 200 to 400 a year, the hospitalization at my hospital and those hospitals I touch dropped.

SPEAKER_03: 2:07:29

Wow.

SPEAKER_06: 2:07:30

And so those numbers that's being prepared for somebody to notice. Look, I have been keeping track. This is what I said I was gonna do three years ago, five years ago, seven years ago. Yeah. This is what I'm doing. Here are your numbers, right? Here.

SPEAKER_00: 2:07:47

Yeah.

SPEAKER_06: 2:07:48

When I see more patients, your risk goes down in the hospital. And so, yeah, outside of the hospital, the insurance has to pay a little bit more. But hospital administrators don't care about that.

SPEAKER_00: 2:08:01

Yeah.

SPEAKER_06: 2:08:01

They care about hospitalizations. When we see patients, when patients see providers who have experience in bleeding disorders, quality of life should go up, hospital rate should go down. Yeah. And um factor level does usually go up. But that's okay because we keep those people out of the hospitals. We change lives with factor.

SPEAKER_03: 2:08:24

Yeah.

SPEAKER_06: 2:08:25

And we do it by being prepared for our physician visits, by asking for imaging. If your doctor says go get an image, go get the image. Yes. And do it now. Drop what you're doing. It's that important.

SPEAKER_00: 2:08:40

Yes.

SPEAKER_06: 2:08:40

Go to the ER, get the image. Because I want to know if that's not a bleed, what is it? Is it a tear of a meniscus that keeps hurting you? Because no amount of factor is going to fix that.

SPEAKER_01: 2:08:51

Right, right, right.

SPEAKER_06: 2:08:52

Is it tendinitis? No amount of factor is going to fix that. You know what I'm saying? Like we need to know what it is we're dealing with, and then we can fix it. But not every pain is a bleed, and not every bleed is recognized as a bleed. As you so thoughtfully reminded us today. Yeah.

SPEAKER_08: 2:09:13

I really appreciate this conversation so much. And I and I feel like that it really starts. We kind of talked about it. Sometimes the problem is between our own two ears. I feel like if we as patients ask better questions and we come to that conversation with some level of empathy to understand, hey, there's a lot going on for the physician too. Like, you know, that that that we're not coming in. I always say there's a difference between being an uh an advocate versus being an activist. Sometimes there's this adversarial type nature that people come in because they've been so hurt, they felt like they weren't heard, they feel like that they're in a battle all the time with their own body. They're they're sort of like come into this with their dukes up and like ready to go. And so that creates can create tension before you even have the opportunity to get with the right person. And so, you know, I do believe we've got to be able to take a step back sometimes, even if you haven't been heard as a person living with a bleeding disorder, that you know, that you still have to find ways to you can attract more bees with honey than than vinegar, right?

SPEAKER_06: 2:10:17

Come fresh to each new interaction. Yeah. And and, you know, I mean, I I'm sympathetic to the physician side of things. I get tired. I am tired. I work really hard. If someone says it took three months to get into you, Dr. Nansen, I say, Yeah.

SPEAKER_08: 2:10:41

I'm that busy. Yeah.

SPEAKER_06: 2:10:42

No, I'm that I, you know, I mean, I'm not apologetic. I do the best I can. I sleep pretty well at night. Because I know I did my best that day, even if I fell short. Yeah. And I couldn't oh, I didn't always have that confidence. I'm grateful that I'm learning that now. Yeah. Um it isn't all up to the patient, right? The patient has to have has to have the right provider who's present and well rested enough to hear what they say. And it isn't always the physician, you know. Sometimes it's it's the nurse, sometimes it's a medical assistant, sometimes it's a physical therapist, you know. But there's probably one person among that team who's gonna have the bandwidth to hear you. So if you weren't sure you were heard, say it again.

unknown: 2:11:44

Yes.

SPEAKER_06: 2:11:45

If you sent a message to your clinic and they didn't respond, maybe they got 80 messages that day. This actually happened to me. I kept having people tell me they left three messages and and why didn't we read respond to them? And I was like, gosh, that's weird because I saw the lists of voicemails that the nurses were pulling off. Like there was always somebody like listening to the voicemail and pulling them off. And we had notebooks full of these things, right? And then the conversations going back and forth between the back office staff and how many times I got interrupted in my thinking to answer a message for for someone that had an urgent call. And, you know, and I'm like, how is that possible that someone left three messages and no one called them back? And it's because when the voicemail got full, someone would leave a message and it just wouldn't record. So they thought they left a message, yeah, and no one ever heard it because it never got recorded. So sometimes, sometimes the provider really didn't get the message the way that was intended.

SPEAKER_01: 2:12:50

Right.

SPEAKER_06: 2:12:50

And so you have to ask again did you get my message? I left a message. Well, no, I didn't. But I don't know why I didn't got that message because I got so many. I mean, I had nurses quit because there's so much work. It's too much. Dr. Nance, you need two nurses. One nurse isn't enough to do to keep up with you.

SPEAKER_01: 2:13:16

Yeah.

SPEAKER_06: 2:13:18

What?

SPEAKER_01: 2:13:18

Right.

SPEAKER_06: 2:13:19

You know? Well, to get Well, why am I so difficult?

SPEAKER_08: 2:13:22

Right.

SPEAKER_06: 2:13:23

You know. Like, why is it so difficult for me?

SPEAKER_08: 2:13:25

I think the thing that that's so impactful is that if we just all understood that give give everybody a little bit of grace, right? If if the physicians can give the patients a little bit of grace and know. You said it earlier at the beginning, I was talking about how like if they're coming in and they're agitated and they're it's because they're anxious because they're in pain in their body, you know. Like, you know, there's a certain measure of like if the if the physician could have a little bit of grace for what the patient's going through, and the patients, I think sometimes we need to give a little grace to what the provider's going through.

SPEAKER_06: 2:13:54

Or just tell us what you're going through. I cannot read a mind. Yeah, I can imagine what somebody needs.

SPEAKER_08: 2:14:00

Yes.

SPEAKER_06: 2:14:01

But yeah.

SPEAKER_08: 2:14:02

Yeah. You can't make it up. You gotta listen. No. Right.

SPEAKER_06: 2:14:06

But but I I don't know what it is if it isn't said or written down or somehow communicated.

SPEAKER_08: 2:14:13

Yeah, and I just think that it you we've again, we kind of said this at the beginning of the conversation is that you can the best place to form your own language is really in community. It's in context of connection with others. And so I really believe with all my heart that this this conversation will have a positive impact for people to give them sort of a framework to feel like they have permission in a way to just be able to say, okay, wait a minute, these, these, these extra bruises, these long menstrual cycles, these difficult bleeds that that just don't seem to go away right away. And I feel like I need more, you know, attention to. Like it it sometimes we just need permission to ask for for additional, you know, uh another look, right? Another another visit. And and then uh I love what you said about just how much you know communication is so important. Is that is going into those conversations with well thought through. We we encourage people all the time to journal their experiences so that they do write down a bleed, uh, they do write down a bruise, they do write down this date in time I was doing this activity and this is what happened, you know. And and sometimes we and photos, and photos, right?

SPEAKER_04: 2:15:21

Take a picture of it. I see a lot of bruises. A lot of bruises.

SPEAKER_08: 2:15:25

Yeah. And so I just feel like that it's so important to gain that that language and that understanding for yourself because sometimes the problem isn't that the treator's not listening, the provider's not listening. Sometimes it's not that the formulary at your insurance company denied you because it you, you know, you asked for it and they denied you. Sometimes the problem is you just didn't realize that this could be a product of your a mutation in your bloodline. You know, that you you actually are not just a carrier, but you are experiencing these symptoms because you actually have hemophilia. And just because somebody hasn't laid put that label in your chart yet doesn't mean that it isn't so. But you having the you you talked about earlier the curiosity, even for yourself, like to go, is that tingling and burning and is that pain, is that long side, is that, is that normal? Is that what I should be? And investigating that and trying to build a partnership with the provider. Instead of it just being a one-way, you know, street, it's it's more like how do we work together in this? And and um I I I you know I'm so grateful for the work that you do. And I know that if all of your patients were here in this moment, that they would just be uh filled with so much gratitude to thank you so much for what you do for them every day. But your your knowledge, your wisdom, your expertise, your grace, and your your um lived experience of your own is, I believe, changing the narrative, not just even in this country, but really globally. I I I don't know of another physician. There may be one, but I don't know of another female physician who has had the lived experience of having a bleeding disorder and having to treat themselves and also treating as a hematologist treating other women and other men too. And um and I just I just um you know you you very well, I believe, can set the tone and the trajectory for the entire bleeding disorder's population globally for what the future could look like if we all just listen to you. So thank you so much for sharing.

SPEAKER_04: 2:17:25

No pressure, right? Oh, yeah, no pressure. No pressure.

SPEAKER_08: 2:17:28

But really, though, keep going and whatever we can do to help cheer you on. We're all uh we've got the biggest uh fan base, we're all Dr. Nance fans. So um thank you so much for taking your your very, very precious time and energy to to share your stories with us today and to also just do the work that you're doing every day. I know it's filled with passion and purpose for you, and uh, we see that. We see that and we celebrate it, and we're I'm so so grateful for the work that you're doing and for your heart for our community and uh whatever we can do to help you and support you along the way we want to. So thank you so much, Danielle. Really appreciate you.

SPEAKER_06: 2:18:03

Thanks for having me, Jonathan, and your whole crew here. It's been a wonderful experience. I really appreciate the opportunity to be here in your neck of the woods and see how you're doing things. Yeah.

SPEAKER_08: 2:18:14

So a lot of work to be done. Still more to do.

SPEAKER_06: 2:18:17

Still a lot, still a lot to be done. Yeah. Yeah. Thank you so much.

SPEAKER_08: 2:18:20

Thank you. Thank you for joining me for the Hope Podcast today. And a big special thank you to my guest, Dr. Danielle Nance. It is so important to have these conversations like this to further the discussion about how we can advance research and increase awareness. And you can help out by sharing this episode with maybe your uh providers or maybe your friends and family who have also been aware of bleeding disorders and learn more about the things that you may face from day to day. I hope this episode helped you. And if you liked it, please be sure to take a moment to like and subscribe this video. It helps the algorithm out. And it's important to be able to share this information further with more people who may be affected by bleeding disorders. And also we want to say a big thank you to our episode sponsor, Janintec, for giving us the opportunity to be able to share more content like this with you. It's so important to be able to have moments like this, and we hope to see you in the next one. Thanks so much.