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Hope Charities
Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Hope Charities
She Refused to Stay Silent: Connie Montgomery on Diagnosis After Decades of Dismissal
A candid conversation with Connie Montgomery charts a lifetime of being dismissed, the car accident that unlocked a Factor VII diagnosis, and the fight to secure prophylaxis. We spotlight bias, culture, and the power of narrative medicine to change outcomes for women with bleeding disorders.
• Growing up with unexplained bruising and nosebleeds
• Gullah Geechee cultural privacy and silence
• Repeated dismissal by clinicians and loss of trust
• Heavy menstrual bleeding through two pregnancies
• Diagnosis after an ER doctor listened and consulted
• Phenotype over lab numbers in rare bleeding care
• Securing prophylaxis and navigating insurance barriers
• Building trust and health literacy with care teams
• Organizing patient power and industry accountability
• Compassion that moves beyond empathy into action
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Special Thanks to Genentech for sponsoring this episode.
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. In this episode, I have a dear friend who's joining me today to talk more about her experience as a woman living with a bleeding disorder, Connie Montgomery, Factor VII deficiency with so many challenges throughout her lifetime, and excited to unpack this conversation with you today. I want to say a special thank you to our episode sponsor, Janintec, for sponsoring this episode. Welcome to the Hope Podcast. My name is Jonathan James, and I'm excited to have a special interview with a special guest, Connie Montgomery. It is so great to see you today. Thank you so much for joining me for the Hope Podcast.
SPEAKER_04:Thank you so much, Jonathan, for having me here today. I'm very excited about this time and us having a chance to talk a little bit about my journey in bleeding disorders.
SPEAKER_02:Yeah. You know, I've been looking forward to this conversation for a long time. We have a very close mutual friend, Debbie De La Riva, who has introduced us. And I'm just so thrilled just to understand more of your background and your story. And I've been looking forward to this conversation for a long time. And so uh you have so many unique twists and turns in your story and so many things that you've overcome, and so much depth to what you've learned and how you've been equipped and really just the warrior that you are for yourself, but also championing for others because you've empowered so many people. And so just for people who are listening that may not know you like I do, or maybe nearly as well as Debbie does, I'd love to know a little bit more about where you're from and how you're affected by bleeding disorder, and then we'll just kind of dive into your story from there. So why don't you tell us where you're from and how you're affected by bleeding disorder?
SPEAKER_04:Absolutely, Jonathan. I'd like to share with you I am from a small town called Pauli's Island, South Carolina. It's the southeastern part of the United States. Um, absolutely love being a South Carolina young lady. And um I'm married and I have two adult children, and I am in the bleeding disorders community, and I have factor seven deficiency. And um, I was diagnosed with factor seven deficiency much later in life, like many women. I was in my mid-30s when I got diagnosed.
SPEAKER_02:Wow. Wow, I there's so much to unpack in this world. It's so you are a rare jewel in many, many ways. We just recently had an article that we published about your story in the Hope Factor magazine. So I know a lot of people are reading that and getting really to know your journey a little bit more. But this conversation really is exciting because we can dive deeper into some of your background and some of the some of the challenges that you face. But I, you know, starting out just kind of at the beginning, you know, when when as a little girl on your journey, did you have any suspicions that you had a bleeding disorder early on? And and what was it like growing up?
SPEAKER_04:Well, growing up in rural South Carolina was really different for me, and it was interesting because we were very active people. We did a lot of outside activities. Um, there was, of course, gardening and that type thing, um, and running around playing and having hopscotch and playing jack stones and pickup sticks and all those type things that little girls did back then. Uh, a lot of the activity was outside. It was engaging with just what was around you and playing with cousins and this type thing. Um, but I knew something was a little different about me because of the bruising, the spontaneous bruising. Um, I'm a brown person, a black individual, identify with a black diaspora, African American. However, I would always have these black and blue spots on me that were purple like that would just pop up spontaneous, seemed like to me, um, in various places on my body. And I'd wake up that way. And then sometimes I'd wake up and there would be uh blood on my pillow, and I couldn't quite, I didn't quite understand that. But it wasn't until my pubescent and preteen years that um things started to uh just spiral and go downhill faster. And so having a conversation with my mother, she and I, though mother was gulagy, and in the gulla geechee, uh geezy culture, we don't believe in sharing family business out into the world. But we knew that we had to get some help from myself. So mom and I um made doctor's appointment, went to the doctor, shared what was happening with me, the bleeding spots on my pillows, the long nosebleeds that lasted for 10 to 15 minutes, the spontaneous bruising, all of that we shared, um the swollen joints, the sore and painful joints, we shared all that information and were told that, you know, they thought we were exaggerating about the condition. It couldn't possibly be that bad. I was making up those symptoms. They didn't believe us, dismissed us, and uh that just left a very bad taste in my mouth for healthcare and healthcare practitioners. So for quite some time, Jonathan, I put on the back burner my health and uh my health journey, and I just coped and dealt with it as did my mother, the best that we could by taking care of myself and ourselves in the home. And um that's what we did. I packed the extra clothing that you pack when going to school. I didn't get to participate in a lot of the outside activities like a lot of my preteens and teenage friends did, and absolutely no sleepovers um that I have with my girlfriends, like the slumber sleepovers that girls had a lot back then. Didn't have any opportunity for that type thing because I would bleed through my clothing and uh have to change clothing and garments frequently. So went through a lot of that, and that made my teen years a bit difficult uh to navigate, but I was always prepared, always cared a satchel with extra clothing.
SPEAKER_02:Wow. You had to be because you just knew that there was a possibility that could happen at any time. Tell me about your family dynamics. You have siblings?
SPEAKER_04:Yes, I do. Um, I was number three of the four girls um before my mother adopted my youngest brother in her later stages of life. Um, and with three girls, um, Brenda being the youngest, four total, um, that was kind of hard on mother because she was married for 14 years. And after uh mother got a divorce um from dad, with him taking a job due to his um low educational level, he worked on the road quite a bit. And so um their marriage suffered at the cost of this. And so after 14 years of marriage, they got a divorce, and mother was left to raise her four girls. And I did not want to add or contribute to the stresses. I was smart enough to know that, even young, uh, that my mother had by always complaining with my health issues. So that's another reason, too. I put some of the health uh uh issues that I was struggling with with the bleeding disorder on the back burner with the noseblees. I just tried to deal with it. I'd go to school sometimes, Jonathan, and my nose would just pour, poor, poor blood. And I would use all the tissue, the paper towel, everything that was in the bathroom to try to manage it to the point where um I'd be missing a good bit of the instructional time in class. And I just try to clean up everything in the bathroom and just return to class like, you know, there was no problem. And I always had the extra change of clothes in my satchel so I could change um and put on a different top if I needed to. But it made things kind of tough. But I felt like mother had enough she was dealing with, trying to raise four girls on her own, even with her limited educational level. So I didn't add any additional stress to mother. She was keeping uh care of our household, she was taking care of me and my sisters, and she was working two to three jobs always. So that was enough for one person to deal with, I felt.
SPEAKER_02:Did the did your other siblings have any symptoms that they displayed or any other family members beyond even just your immediate family that have any symptoms?
SPEAKER_04:Well, like I said, my mother's Gulagie, and a lot of times in the Gulagsi culture, we don't always talk about, right? Um, what's going on with you medically? We are resilient, a proud people. So we just cope and we deal and we handle the best we can whatever situation we find ourselves in. Even amongst ourselves, uh, there wasn't a whole lot of conversation about it. But I do remember hearing uh some of the great aunts talking about free bleeder syndrome. Free bleeder syndrome. Later in life, I learned that that free bleeder syndrome was a part of this bleeding disorder situation that I ended up with. And I have a younger sibling whose child was born. Um, and he, her son, presented with a bleeding disorder. And that started to open up the doors, yet we still didn't talk much about it amongst ourselves.
SPEAKER_01:Yeah.
SPEAKER_04:And definitely not to others until we were desperate and needed the help. And then we were dismissed by healthcare professionals and clinicians. And that just set up a level of um feelings for myself that uh I wanted healthcare to look differently for other people. And so later in life, I decided to become a healthcare practitioner, an occupational therapist to be exact, so that no one else I thought that uh I would have the opportunity to work with would feel the way that I felt, which was dismissed, unheard, and unseen.
SPEAKER_02:There's so much to unpack with that because I feel like that it there's you had it was the perfect storm in so many ways, right? You had a lot of dynamics going on there that was suppressing um your ability to ask questions to professionals, to be able to seek for a fair response from professionals. Um being in the deep south, I can't help but think that you had some discrimination issues during the timeline that you were growing up as well. Like, how did that impact your ability to to communicate and even expect in interaction? I mean, your family dynamic alone is like we don't talk about this. I mean, who who are you supposed to turn to? How how do you even cross that bridge?
SPEAKER_04:Well, for me, um, my faith played a huge part in how I was able to navigate and move forward, even as a teen, you know. Um, I spent time um talking to the Lord, praying and reading my Bible, and that helped me navigate and get through some of it. But to tell you the truth, I wish at that time there were um another outlet for me. And I really do wish that healthcare practitioners and clinicians at that time listened to what my mother was saying and listened to what I was saying. Because within myself, that set up a feeling of uncertainty that though these people are supposed to be professionals, you're not even listening to what I'm sharing with you, and I'm directly in front of you saying what's going on. My mother's saying what's going on, and you're not hearing me. So that right there made me question their ability, even later in life, to be the type of professionals in healthcare. In healthcare, you're supposed to care. And I wasn't experiencing that or seeing that, nor did my mother. So I thought, yeah, healthcare is where I want to go. That's the type of work I want to do. And I don't want anybody else who would need my services as occupational therapist to ever feel that way. Um, but more importantly, I think for me, what it did was it gave me an open window, first just first rate view of health and health disparities in this country. Because I have to be honest, being a black woman in the South, not feeling seen or heard, also being someone from the Gulagie culture, knowing, knowing the atrocities of the enslaved, because I'm Gulla Geechee. My family came forcibly to the United States. Um, we knew that prejudice and bias was there and is here still, but to experience it in that way in the healthcare setting was not a good experience. Because, you know, we heard the stories. I heard the stories as a child growing up, you know, about, you know, our first medical experiences being on the slavery auction block in Charleston, which happens to be about 72 miles from where I currently live. But it's one thing to hear about it being experienced from your ancestors and those older than you, and then experiencing it in modern day time yourself, going to the doctor, knowing something's wrong with you, bleeding for 10 to 12 days with your menstrual cycle, having extreme menoragia, passing huge clots and telling this to somebody, being vulnerable enough to open up and share this with somebody, and then being totally dismissed and saying, no, no, that's that's that's not what you're experiencing. You're exaggerating about that. That's not happening to you. And no father, no father workup assessment evaluation being done. Uh it just felt inhumane.
SPEAKER_02:I can't even imagine. I'm so sorry. Thank you, Jonathan. I know that that's part of what fuels so much of your passion is not wanting others to experience what you went through. And it's it's one of the things that I think that you know is hard for people to understand that haven't gone through that. I mean, I you know, I think I think that there's there's a certain measure of dismissal that anybody with a rare disease or or or even an invisible disease understands. But the compounding, I can't think of I I just it just seems so overwhelming to me to think about just in every sense of uh and everywhere you turn that people are just completely dismissing what you've been through. We know that women with bleeding disorders in general, the I used to say the science hasn't caught up, but that's actually not true. The science has been there for a long time. And um, but I think about that in the context of what you shared about discrimination, even in this country. It was a hundred years plus, maybe two hundred years before we started to really get to a point where there's some sense of like, okay, why are we still having like why are we still treating people inhumane? You know, there's a sense of equality that is we should see each other as human. We should see each other as as as the same. And I don't understand, you know, uh, I don't understand what that's like. I I it's it's remiss if I don't say, I mean, I'm a middle-aged white guy, right? I can't get around that, you know. And so, and and and so all I can do is try to is try to imagine what that was like. And and with the few things that I've experienced in my life, it's been a small, tiny fraction. And so the fact that that you've been able to push through and overcome over and over and over and over again in all of these hurdles, you have had everything against you. I I can only imagine, you said it at the beginning, your faith is what helps you to push through that. I I I it but it's also your internal fortitude, your your endurance, your your passion for others, um, all of those things. It it just it it you know it's gotta be the compounding nature of all of your resilience too that has helped you to continue to push through all of those things. And I see that in in not just your life story, but I can imagine you were you were that way even as a teenage girl pushing through because you weren't gonna take no for an answer no matter what. You were just gonna live through it.
SPEAKER_04:Thank you so much for saying that. Um I think when life people that have challenges and adversities, we have to validate the uncomfortable feelings that those challenges and adversity give us. But Jonathan, I don't think we can lay there. We can't stay there. We must we must give people grace express what it is we feel the best we can, right? And then find solution and strategy, hopefully, to make things better. Which is exactly what I feel like we are doing here, even with this podcast. Yes, opening up and being vulnerable like this for me is not easy. First of all, based on my upbringing and the way I was reared, but it is necessary because I want no other little girl in this country or woman or teen or person to feel the way that I was made to feel. I I I don't want that for anyone else, you know? And so if hopefully my story is out here and I get an opportunity to share it far and wide, people will think deeply and think long about the person sitting in front of them and treat them with compassion.
SPEAKER_02:It's so good. It's so good. It's the only way that we progress in humanity, right? Is that it starts with listening. And um that's why I love your story. There's so many parts of your story I want to get into. But let's we kind of left at teenager years, right? And so it was another quite a while. I mean, 35 is when you were diagnosed officially. So let's talk about going through the end of high school, getting into college. What was that like? I mean, you're still dealing with all these symptoms. Are you still asking the doctors the question, or have you given up on professionals being able to help you at any capacity at this point?
SPEAKER_04:Because I decided to go to a local college after high school, I went to Francis Marion College, now Francis Marion University, and I studied there to get all my prerequisites to be accepted into the Medical University of South Carolina so that I could become an occupational therapist. I knew, because my mom was a single parent, I had many factors or competing interests at the time. I knew I was going to have to balance whatever was going on with me because I still didn't have a diagnosis, whatever was going on with my health and the bleeding issues, work and go to college. So what I did was in the one place I did not want to go, I went there to be a helper. I worked at a local hospital. I worked at McLeod Hospital in Florence, South Carolina, in the SICU as a ward clerk while, and at Sears part-time on the weekend, while going to college at Francis Marion and trying to manage my bleeding disorder. So with having the jobs, the bleeding issue, and going to college, four-year college to get my prereqs so I could get into Medical University of South Carolina to get in the occupational therapy school program, it was a true balance. And making certain that I didn't miss too many days out of college and class work so that I could keep up and stay on top of my studies so that I would graduate on time, that was a balancing act. I bet. That was a balancing act. But I knew after doing it that I could do it if I push forward and have the support system of at that time my sweetheart, who became my husband my sophomore year in college. I got married a sophomore year in college, and he supported and helped me greatly so that I could finish college and manage having a bleeding disorder, even though it was undiagnosed at the time, by going to doctors' visits and talking to them and telling them, okay, I think I need help here. I think it was my sophomore year in Beaufort, South Carolina, when I went down to visit him. And I went for just a regular, a routine check of uh OBGYN visit. And the doctor just said to me here again, I think you're lying about all of this straight to my face. I don't believe this is happening to you. And I did not go back to another physician for the next, I think, three years after that. I just coped the best that I could until I finally graduated in 1993 from the Medical University of South Carolina.
SPEAKER_02:Oh my God.
SPEAKER_04:Um wow. But I was newly married, I'll never forget it. It was 1990. I was newly married when I went to see him. And I just wanted to make certain everything was in order and things were okay and that uh he would consider hearing my symptoms and possibly do an assessment and evaluation and look farther into what was happening to me. But uh that wasn't the case. But after that doctor turned me down, my husband was stationed at the Marine Corps Air Station in Beauford, and so that's why I went to the OBGYN down there. I didn't go back for three years. But I say that to say all of this. You know, one interaction you have with a person, you don't know how long and how far that interaction could go. Um so for three years after that, just for a random teeth cleaning, I did not go. Um I it I just shun healthcare professionals from that point on, even though I was in college trying to become a healthcare professional. I put my own health on the back burner or not even on the stove. Um and I don't recommend that. I do not recommend that. Um I hope that someone in the same position would go and try and get care, get a second opinion, a third, a fourth. That's why I so strongly advocate now for women and for uh girls with health care issues, be it a bleeding disorder or a chronic health issue. Go to someone else. Go and speak your truth until you are heard. Share your symptomology, regardless of what the other clinician or the person on the other side of the table tells you.
SPEAKER_02:Yes, that's so good. So good. There, I I again just, you know, I I'm even thinking about three years. I don't even know how you go back, even after three years. I mean, that just shows again your your you know, fortitude to say, you know what, at some point I'm gonna, I'm gonna get, I'm gonna step back into the ring. And of course, at this time, there's no Google, there's no like WebMD to like search around, or it's really probably pretty frail at this point, even to be able to do your own research, right?
SPEAKER_04:Right. But the beginnings of that was starting, but even with that, um, it gets worse because the only reason I returned to the doctor is because I'm bleeding and I'm bleeding a lot, and I don't know what's going on. And this bleeding has taken up from the 10 to 12 days of a menses to at least half a month now, and I something's not right. So when I go back, I go back to see an OBGY-in in Florence, South Carolina, and I learned that I'm expecting a little one. Um, but this is shocking to me because how can I be expecting a baby and I'm continuously bleeding? Um, but certainly it is happening. And um, when I went back was when I had to go back because the pain was so bad and the bleeding had uptake. Wow. But even worse atrocity happened to me because I learned that I was expecting that little one, and he was born January of 1994. But during the entire gestational period, during my entire pregnancy, I bled every month, and uh it was extremely hard. It was just a nightmare of a pregnancy. I was always anemic, I was always tired, and uh still no further tests or anything were ran or done. And uh even when I changed OBGYN doctors three and a half years later, when I got pregnant with my second child, which was 97, very similar occurrence, and I went from a male doctor the first time I had my first baby in 94 to a female doctor when I had my baby in 97. And it was just blatant disregard for the things I was sharing, and by that time I'd become a healthcare professional myself, and I knew, I knew I had to do something different.
SPEAKER_02:Oh my gosh. So, so walk me through how is it that you eventually find out that you're diagnosed? I mean, how do you how do you get to a diagnosis?
SPEAKER_04:A car accident en route to Charleston, South Carolina leaves me in a canal ditch with the front of the car, neck and neck, with a huge concrete um boulder that was in that ditch. But the blessing of that car accident opened the door and the windows to what was going on with me all of my life. It was a knowledgeable ER doctor, Dr. Richmond. I'll never forget him, you'll forget him. He graduated from Richmond. Richmond, the Medical College of Virginia in Richmond. That man was a blessing unbelievable. After looking at my labs in the ER and seeing that the bleeding wouldn't stop, he made a consultative call to a hematologist. And between the two of them and weeks in the hospital, them going back and forth looking at the test, they were like, this is congenital factor 7 deficiency.
SPEAKER_03:Wow.
SPEAKER_04:She was born with factor 7. In the emergency room. I learned that being in the hospital because once I was in that emergency room, he placed me in the hospital until all those tests, until all those consultations were done with that hematologist. Wow. So Dr. Richman and that hematologist really blessed me because they gave me answers that I had been looking for for years.
SPEAKER_02:And what really should have been a tragedy that many people most likely would have died from even in the car accident, here it becomes literally a turning point for your the window to your future and solutions, right?
SPEAKER_04:Well, the thing is, I almost died having the two children, so I had emergency C-sections. My children didn't come here easily. My story is hard. Um I almost died having both of them. But they made it and I made it. Never had a blood transfusion either. Just went home sick, and when you see a black person turn gray, they're about at the grave. And um that's about what I look like. Pretty gone. But I made it through those years and I made it through that time. But I think I've made it through all of that for this very moment and the moments that I'm living now, where I get to tell and share my story. Hopefully, hopefully, this country and so many others that struggle with health disparities and gaps will hear my story. And healthcare practitioners and clinicians and even family members will hear, listen, and hear people's stories and hear their symptoms and do something about it.
SPEAKER_02:Yes. You go from from this car accident, getting diagnosed, getting solutions. Does that lead to treatment right away?
SPEAKER_04:No, that does not lead to treatment right away. Because I go and see a male hematologist, and this male hematologist, at the recommendations from the hematologist that consulted with Dr. Richmond, the ER doctor, tells you you might want to do some further testing, look closely, and see if this individual would qualify for prophylactic treatment. Well, the first hematologist did not believe that uh that was necessary and that I needed that based on my lab work only, wasn't listening to what I was saying. And see, a lot of times with your factor 7 patients, the levels may look different from the symptomology, which is what the patient or the person is experiencing. Right. I think sometimes our clinicians and our healthcare practitioners, even myself being a healthcare practitioner, uh, we don't really dial in and tune into what the patient or what the person right there in front of us is saying. But if we do more of that, that would help with better patient outcomes and better overall outcomes for caring for people.
SPEAKER_02:One of the things that I think is interesting is that you're hearing more talk these days about phenotyping. Obviously, genotyping is so important with genetic mutations, but phenotyping essentially is just how it impacts you, right? It's your story. And and I encourage women oftentimes, like, man, utilize you gotta speak in a language that even the healthcare provider can understand sometimes. You know, you're I had a friend of mine who's a physician that says, she always says, you know, that at the core and the heart of every physician is a scientist who's living inside. And sometimes you gotta kind of intrigue the scientist inside of them to make them start thinking and and and trying to investigate, right? Yeah. Um, I I heard a an old doctor who who is about 85 years old. His son was going through medical school and he gave his son this advice. He said, he said, diagnosis in today's medical practice is a lost art. And he said, if you will just utilize your, he's you're gonna have to self-educate because they won't teach you in this in school. He said, but he said, he encouraged his son. He says, you need to learn the art of diagnosis. And it starts with listening. And I think that that, you know, uh sometimes using that kind of framework to be able to say, hey, I'm having these symptoms, but my phenotype is, and then you start to express what your experiences can be quite complex. And I understand in in factor seven deficiency, especially, you mentioned it kind of briefly, but there is a real it is a there's a lack of education for many hematologists, even not I'm not specifically speaking to HTC specialists, but hematology oncology as a broader specialty, if you will. There's a huge misunderstanding about women with bleeding disorders in general, but factor seven is extra complicated in the sense that, like you said, the factor, the actual protein levels themselves don't really tell much to the story. It it could, but it might not. It really has a lot to do with that that lived experience, right?
SPEAKER_04:And you need to really listen and dial into what that piece of the puzzle is in the clinic. You need to hear out what that patient is saying to you because as you hear it, then you can start to put the pieces of the puzzle together. But you cannot omit any part of what is being spoken to you. Just looking at the labs or just remembering what you read in a book. You need so much more than that. Um, but I'd also like to say, I think um in this country. Now I'm talking a little bit to my clinician, professionals, and others that like myself, also who've gone to medical school. I think we need to have a lot more narrative education. And some of our classes in these universities and college and collegiate settings, we need to have patients with various conditions come in and educate us about what their conditions look like, as opposed to just what we've read in a book. Because when we do more of that, then we get to a fuller picture of what these various diagnoses truly look like.
SPEAKER_02:It even applies to treatment, right? Because even once you start a treatment path, just because it says it on the label doesn't mean that that's what you're gonna actually see occur in every single instance of every single person. Every person's gonna interpret that treatment even a little bit differently, right? Because we're all different people.
SPEAKER_04:Yes. We're different. We're a diverse population. And so based on certain people's cultures, lifestyle, and let's even go there, their health literacy, what they're able to understand, all of that is going to affect whatever treatment they get. The only way you know that is having a conversation with that individual, spending time with them, getting to learn and know about them and their habits and how it impacts the medical intervention that you're recommending.
SPEAKER_02:So good. I just while we're talking to clinicians, this is I I had a nurse care coordinator at a treatment center one time tell me this story, and I thought it was so wild, I did not even think or consider that this could happen. But again, to speak to health literacy, um, there was this patient that they were giving, and he was treating prophylactically on a regimen, and he was having bleeds just all the time, and and they couldn't figure out what was going on. He was like, Man, you're taking your medicine, right? Yeah, here's my my logs, here's what I'm doing, all this stuff. Come to find out, they were like, okay, she eventually intuitively this goes on for years, and intuitively she says, Look, can you just come into the clinic and I want to watch you infuse? This is just visual observation. Now, this kid's gone to camp and he's a young adult now, he's doing all this stuff on his own. He comes in from clinic, into clinic, he gets ready, mixes up his medication, he goes to infuse. He wasn't getting it in a vein. Now, you tell me who would have thought, number one, to ask that person if he was even getting a vein. I don't think he even knew that what he was doing with the administration of it the the point is is that sometimes the the to exactly what you said, it is a combination of observation, asking more questions, listening more, but also sometimes it's just are they interpreting what you're trying to educate them with? You don't even know that until you actually have that level of observation, right?
SPEAKER_04:And to have that level of observation and even that level of communication, there has to be some type of trust built between the two of you. It has to be more than just a transactional connection, it has to be a relationship that happens between the conversations that you all have where that person feels like I can open up and give you the insights.
SPEAKER_02:Creating a safe space.
SPEAKER_04:All right. Right?
SPEAKER_02:You've got it. That's that's the thing, is that I think so often one of the things that we do once once you do find treatment and you find a trusted care team, I think even as a person who has felt like, and I and I look, I recognize that in my experience it's a tiny minute fraction of what you've experienced in terms of not feeling heard. But even in the little bit that I've experienced in that, there's a tendency for me to withhold information. I just want to get through and go through the motions and do my deed and just get in and out of my annual visit and be done with it. But I've learned actually, I have four kids and two of my kids are girls, and they both have they've been uh, you know, we're we're we moved away from this obligate carrier language, and now we're talking about, okay, they are affected and they need treatment. And so in the process of learning, even for me to help them through this journey, one of the things that I've learned is that I've got to, I have a responsibility also to be vulnerable, to be transparent, and to come prepared to this appointment, to actually be honest and say what's really going on. Because, you know, so much we we have this, I think as patients too, like we expect the physician to come to our side of the table, but sometimes the patient can only help make recommendations or evaluations based upon what the patient gives them to work with. And so we can get in our own way sometimes, too, can't we?
SPEAKER_04:So we have to open up. We have to completely open up, like you said, and be transparent, be honest, and share those tough things to share. We have to just say it. I think that's so important with going forward with treatment. That's so important with going forward with most relationships and partnerships you have in life. Don't start me, John. It's it's it's being open, it's being honest.
SPEAKER_02:Have you stayed married for 35 years?
SPEAKER_04:You gotta be honest. Yes, yesterday was our anniversary. We were married 35 years. And that is the only way, thank you. That is the only way you can do that, is to be open and to be honest. But I have to tell you this four out of four people in my immediate family have a bleeding disorder. My husband was 49 when he learned he had factor five lighting. I was in my mid-30s. My children are blessed to know because we went through genetic testing. If we had not had that opportunity, then I'm afraid they would have been like their parents. If they lived far down the road learning they had a rare bleeding disorder. Now, the thing with that is, is in a country where there's so much resource, that should not be. For our women who are diagnosed in this country, on an average, not giving a specific diagnosis, whether it's Bon Willebrands or whether it's um factor seven or whether it's uh hemophilia eight or nine, not giving the specific. But on average, women are not diagnosed until 16 years out. It was double the time for myself based on so many other things I told you that I think contributed to that. That should not be.
SPEAKER_02:That's right.
SPEAKER_04:So every year I go to the HFM conference for women and teen girls in this nation. And I speak and I advocate and I share with those ladies how important it is for them to advocate for themselves. We can't be the mothers of these sons, the wives of these husbands and all of that and these teens and not ourselves. That's right. Something going on in our body. And no matter how many times the people tell you no, like they told me no, I was making it up, I was dismissed, it was not true, it was not so, that was not happening to me. You go back and you tell them, yes, it is, and you keep finding a new clinician or another person to tell until someone is willing to help you help yourself. I'm passionate about that because of my life experience. But I would not be on the trajectory I'm on had not I learned I had a bleeding disorder in my mid-30s. And I would not be the global patient advocate I am now. Traveling all over the world in September, I'll be speaking in uh Lisbon, Portugal at a health equity conference. And then after that, I'll be speaking at uh in the London at I think it's called the BHA House to the Lords of Parliament and other individuals. It's so important that we hear people when they tell us that there are gaps in the health care system, regardless of what country you lived in. That's right. It's so important that we meet their needs with the social determinants of health so they can access care. Yes.
SPEAKER_02:Yes.
SPEAKER_04:This is a part of our health journey. One can't have a good quality of life without health care.
SPEAKER_02:That's right.
SPEAKER_04:And to have health care, you have to care. It has to be compassion.
SPEAKER_02:That's so good. That's so good. Oh, Connie. So much to unpack there. I want to talk about your treatment because at a certain point, you start to get to a place where in your own journey of this, you start to get to a place where you are able to access treatment.
SPEAKER_04:Yep.
SPEAKER_02:How how did that change your life?
SPEAKER_04:That changed the game because I had the first male doctor, like I told you, didn't think that uh prophylactis treatment was something that I needed, but I knew that it was. And so I had to go on and find another hematologist that understood my symptomology, understood my needs, and understood that, okay, she's going to need this script for prophylactic treatment so that she can get the medicine she needs so she can have a better quality of life. And that took place. But it was not without an uphill battle in advocating for myself. But I'm so glad, so thankful, and so grateful that I did because I think it was necessary.
SPEAKER_02:Did you have challenges with insurance pushing back?
SPEAKER_04:Did you have challenges with the first level of challenge came from the actual hematologist, the doctor that I saw, and then I had to go and find a new one. Then the next challenge came from who would allow patients' assistance programs to help me at that time in 2015 when I needed dire help with paying for my medication. And I was the type of person, I am the type of person, that I'm gonna get the insurance company on the phone, the benefits coordinator for the individuals where I'm gonna get the medication for on the phone, and I'm gonna get, because my husband is a veteran, the veterans benefits administrator on the phone. But I know how to access and do that. Not everybody knows how to do that, but they still deserve access to insurance and care. But after getting all these individuals on the phone and making certain that all the diagnostic codes and everything was in that needed to be, and my medical necessity statements were in, I was able to access the medication that I need. Wow. And they were able to allow charitable organizations to be charitable so that I could get the medication. Because when you're talking about medication that's$300,000 a year, I don't have that out of pocket cost, and I don't know that many people that do. Right. So the assistance was necessary.
SPEAKER_02:Wow. And that's that's its own. I mean, this is so many things to talk about within the the scope of being able to just access medication in general for high cost medications. And the fact that you had to be able to coordinate all of that, you have to really become this is when we talk about being your own advocate, you really have to educate yourself on something that most of us were not trained to do. We weren't prepared for this. And so it's like, how do you, how do you, you know, I mean I love your I love your example of just getting everybody on the phone at the same time. We're gonna do the what do they call it, a party line when we're you know, it's like you know, it's like get everybody on there. And and uh, you know, I heard somebody say one time that, you know, the best way to to uh to to act, you know, to get something to be done is to act with a lot of confidence and act like you know what you're talking about. By the time they figure out that you don't know what you're talking about, they're gonna be already in motion so much so they just want to get it done, you know. So there's a certain measure of that confidence that you have that I'm sure you were just like, we're gonna do this and we're gonna be a team and we're gonna make it work, right?
SPEAKER_04:Exactly. Our health depends on it, you know. As people living with bleeding disorders, we can't afford to do life almost any other way, really.
SPEAKER_02:That's so true.
SPEAKER_04:Have a good quality of life. We cannot.
SPEAKER_02:You know, you mentioned earlier about being a global advocate, and you are, if I've ever seen one, you have spoken at uh, you know, the National Organization for Rare Disease for NBDF, you've spoken for HFA, you've spoken for HFN, you've spoken for all these different places all over the place. You have the most uh you know rigorous speaking schedule, and and uh and so it is really beautiful to see you out there and and advocating for our community. When you look at people and especially women with bleeding disorders, who are still not being, you said it earlier, 16 years on average across all bleeding disorders. 16 years, and and I believe, if I'm not mistaken, that statistic is from the CDC that shows that it's actually from the first evidence of a bleed. So, so there's a there it's it's an activity of bleeding that occurs and it still takes 16 years longer than it should. Um, I believe the average age is still around 35 or 32 years old, somewhere in there for women as well, right?
SPEAKER_04:And for every dollar spent on a male with a bleeding disorder, only 25 cents goes to females.
SPEAKER_02:And women's health in general is this way too. I mean, I think it's interesting to note that women's health in general is it it is already, men do get more timely responses. And it's really unfortunate. And at the same time, what can we do as a community to share our story, to share our experiences, to share our journey? What can we do as a population of people living with rare diseases do to try to create change in that way?
SPEAKER_04:We're gonna have to be on the front lines. Our stories are no longer ours. They have to be told. We have to walk the halls of Congress. We have to share our stories, we have to knock on doors at the state level, at the federal level, and if you're placed in trajectory like myself globally, you have to let people know there are real people behind these evidence-based data and numbers.
SPEAKER_02:It's not just a data point, it's a person.
SPEAKER_04:It's a person. It's a person. And you know, I matter, you matter, we matter. We have loved ones.
SPEAKER_00:They're counting on us.
SPEAKER_04:So we have to go forth and do that. That's one of the things we have to do. Another one of the things we have to do, like I said, is we have to get into these academic settings and these medical schools, and we have to share our stories there too. Before these practitioners and these clinicians get out into practice, we have to talk with them, share with them, let them know that besides what they've learned in the book, this is also happening to individuals. This is happening, and it may be different for John and Susie. We have to be in person, people facing, sharing our stories. Um, and I would think the next thing we have to do is the third thing, we have to actually educate and encourage and uplift one another to keep going, you know, to keep going, to keep telling your story, to keep being an advocate for yourself and your family members, and to uh never give up.
SPEAKER_02:I always say that there's uh three people at the seat of a decision of getting a medication or getting a treatment right. There is the physician who has to write the script, that kind of is a big, big role, obviously. Um there is the organization that's gonna pay for it, which is the insurance company, that's an important person at the seat of the table. But a third of the equation, a third of the voices, if you will, at the point of decision of getting treatment is the person living with the disorder. And I think so often we think of ourselves as the leftovers, we think of ourselves as the the lowest priority. In essence, neither one of those other parties, independent of themselves, can have any transaction going on. There is no medication, there is no, there is there is nothing happening, but it's the patient that's at really at the center of the equation. And I think I've said for a long time, I really believe if patients really understood the power that we have to be able to speak up for ourselves, but also collectively as a community to come together to really voice what our needs are and and really assert our influence, if you will, into the conversation. Because at the end of the day, a doctor can make a recommendation, but he's just practicing. He or her is just practicing. They're making a recommendation. That's what she's that he or she is doing. Exactly. And they're also really at the mercy of making certain that somebody pays for that ability to happen, which is the insurance company, that's important. Um, unfortunately, I think insurance companies have too much to say these days. They're influencing limited formularies with only a few drugs, they're in influencing which doctors to see nowadays. And don't get me started on PBMs, because we go there all day long too. But I think at the end of the day, if we understood our voice and how much influence that we could have if we really got organized. And the the truth is, is that I think as a as a as a patient population, just in general, and again, I'm speaking in very generic terms cross-rare diseases as a whole, or any chronic illness for that matter, it doesn't even have to be rare. But we're disorganized and we don't have nearly the financial backing. Most of us are not going to have anywhere near the money that an insurance company has, or some other company has to lobby against this. So the progress is really incumbent upon our passion and our directive. And it starts with winning the little battles along the way for yourself and your family. But I think the next phase is that once you start to win some of those battles and you collectively get together and you share experiences with one another and you realize it in a sense of community, then we have a collective voice that has the opportunity to create real change. But it takes us getting organized, focused, and determined. And without that, I don't think progress will ever happen.
SPEAKER_04:But we have to harness the power of our voices and our experiences. And we have to, we have to go forward and tell our stories. And we have to say, listen, Company A, I use your products. Several of us, especially we women and girls in this community, we use so much of your products. Why are you not supporting our programming? We have to use the power that you were just speaking of, of our with our voices, and collectively come together and say, if we're using product A from Company A, then we need your support with our programs that help us not just survive, but thrive.
SPEAKER_02:Yes. Yes. Yes. It's so frustrating that technology exists to solve these problems. And so often so many people suffer silently because they can't even get to the solutions that already exist. I think that it is the fact that we raise our voices and share our stories together collectively that actually helps to move that into a place of progress instead of stagnation. And I and I I personally am so inspired by your story and the work that you're doing to continue to be brave and and the courage that it takes for you to continue to stand on the stages that you stand on to speak up for women and leveraging your story to do that. I mean, you're using resources that that were tragedy after tragedy after circumstances that should never have taken place, and you're turning it into something that's really beautiful. It's truly a story from beauty, from from ashes to beauty. And I really am so thankful to know you. I'm so thankful to watch you. I I am inspired by your journey. And um, I really believe in in so many regards, it's it's your story and your journey that is is really providing hope for a whole community of women and girls out there that just that you have overcome some big battles that some women will never have to overcome. There's so much further to go and so much progress that needs to be made. And I know I'm committed to that, you're committed to that. I know hope as an organization is committed to that. I know as a community we're committed to that. And I don't think that I think it's gonna, you know, take some time and determination and resilience and all of the things that you embody. But together, as we link arms, just like we have in this conversation, I think our future is brighter tomorrow than it was yesterday. And I think we have the ability to be able to do great things for each other and for ourselves as we continue to move forward.
SPEAKER_04:Thank you so much for saying that. Thank you so much. That means that means a whole lot to me. You know, I'll know Jonathan that I've done okay in this world. When I can look at it and your daughter, and their daughter, and their daughter. I don't know that I've done all right in this world. When the little girl looks in the mirror and feel the way that I felt scared, anxious, we're all human beings. We can be kind, we can listen to each other, and we can take stock in what is shared. And then we can be compassionate, not just empathetic, but compassionate. The difference in empathy and compassion is compassion wants to alleviate the suffering, so it acts. Empathy says, I hear you. Okay, I feel you. I know what it is to walk a mile in your shoes, but compassion says, let me give you a smile, a pat on the shoulder to see what I can do to help you. So beautiful. That's what I want.
SPEAKER_02:We are doing it, and um I'm happy to be uh part of your fan club, and I look forward to seeing so much more happen, and uh I certainly for look forward to being able to link arms and help even more people that hopefully you're watching this story today and getting inspired already, like I have been, but also, like you said, laying the groundwork for generations to come so that others won't have to fight the same battles that you fought. The ground that you have had victory over in your journey and in your life, I believe, has laid the foundation for the next generation to stand upon. And for that, I'm super grateful. Thank you so much, Connie.
SPEAKER_04:Thank you. And hopefully, ladies and teens, we'll see you out there at the Hulk conference in November. Hopefully, I'll be there.
SPEAKER_02:Yes. Yes. Awesome. Thank you so much for joining me for this conversation today. Please, please, please continue to share this episode with your friends and family so that no one feels alone. Thank you so much for listening to this conversation today. I hope it inspired you and I hope that you have a chance to be able to share this episode with your friends and family. If you haven't already, please make sure that you like and subscribe. It really helps the algorithm out to help us be able to get this information in front of more people. And also, I want to say a special thank you to our episode sponsor, Janentec, for sponsoring this content and more like it. I certainly hope that this episode helps you and your family in your journey as you uncover the challenges and find solutions for sticking together and advocating together. I hope to see you in the next one. Take care.
