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Hope Charities
Honest conversations about bleeding disorders, rare diseases, and chronic illnesses.
Hope Charities
More Than a Carrier: How Unexplained Injuries and Surgery Led Me to a Diagnosis - Amanda Gradzewicz
We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families.
• growing up with a dad with severe hemophilia A
• invisible symptoms in teen years and surgery complications
• being told “just a carrier” versus getting a real diagnosis
• marriage, military life, and finding the right HTC
• parenting a daughter who is a carrier and a son with severe hemophilia
• the role of community events, conferences, and social media
• documenting bruises, bleeds, and periods to advocate for care
• mental health, exercise, and therapy as caregiver essentials
• navigating public life with an invisible disease
• future of treatment, gene therapy, and a hopeful outlook
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Special Thanks to Genentech for sponsoring this episode.
Welcome to the Hope Podcast. My name is Jonathan James, and I'm excited today to host a special episode about women with bleeding disorders and have a great guest joining me, Amanda Graduitz, who you're going to absolutely love her story. As a little girl growing up with a dad with severe hemophilia, she learned a lot about bleeding disorders from an early age. Later on, she had a son with hemophilia and then found out that she herself was also affected. She's had a great impactful story, and I can't wait for you to hear more about that in our conversation today. I want to say a special thank you to our episode sponsor, Janintec, for hosting this content and more educational information just like this episode. If you haven't already, make sure that you like and subscribe to our channel so that we can continue to provide more educational content just like this. And we'll get into the episode now. Welcome to the Hope Podcast. I'm excited today to get into an important conversation with Amanda Graduates. It's great to have you. Thank you so much for joining me on the Hope Podcast today.
SPEAKER_00:Thank you. I'm happy to be here.
SPEAKER_02:Well, I'm really excited to dive into your story. You have such an interesting background, and we're doing a series right now for women with bleeding disorders. And there's so much to unpack along your journey of discovering what it's like to live with a bleeding disorder yourself. Uh, but gosh, your background is just so full of twists and turns and some really amazing uh things that I'm really, really excited to dive into and to learn more about. And and uh I think a lot of girls and women can identify with some of the things that you've been through. So thank you for doing this. And uh I'm I'm really excited. I think that there's a lot of good things for us to talk about. Uh let's just kind of start off with if you will, just tell us where you're from and how you're affected by a bleeding disorder.
SPEAKER_00:Um I am from Iowa, but I currently live in the Carolinas with my husband and two kids. Um my father had severe hemophilia A, and so I'm an obligate carrier of severe hemophilia A. Um, and now I have a daughter that's also a carrier and factor 8 deficient, and my son has severe hemophilia.
SPEAKER_02:Okay. Wow, you know, it's like every time you meet somebody with hemophilia, you're like, oh wow, that's great. I mean, it's not great, but I mean I'm so glad that we know each other. You know, so that's cool. So I uh want to talk a little bit about gosh, growing up with um, you know, when you when you were young and your dad had severe hemophilia, obviously you were aware of hemophilia really your whole life. I mean, probably since your earliest memories, right? So tell us a little bit about what that was like growing up with a dad with hemophilia and what your understanding of hemophilia was back then.
SPEAKER_00:Um my understanding of it, I guess, was kind of vague, of course, until I was older. Um, but I did know, I realized kind of at a young age that my dad was in pain. Um, so I remember helping him put his socks and shoes on in the mornings when he wasn't very mobile yet for the day. Um and I remember helping him uh find a vein and all of that stuff for his medicine, but that was just our life. He was my dad. Um but my understanding was was pretty vague.
SPEAKER_02:Pretty limited, yeah. Did you feel like I mean hemophilia was just always there? It was just part of your dad's life, so therefore it was part of your life, right?
SPEAKER_00:Yeah, and I don't I don't really feel like it um it took a lot of our how do I say this? I don't really feel like it um was like a big focus, I guess, in the house. My dad um would do his profy infusions and he was kind of slow in the mornings, but other than that.
SPEAKER_02:It wasn't like a topic you were always talking about.
SPEAKER_00:Yeah, yeah, no, it was just our life, our family, and our our jive.
SPEAKER_02:So yeah, that's interesting. I think a lot of people, you know, sometimes I know as a person living with humophilia myself, like I feel like, you know, especially when you you get super involved in the community and you're constantly you're talking about it a lot, you know, it's like there is sort of this sense of like, you know, it becomes a focal point at some point. But I mean, you know, it's it's so important to realize that we're human and that we have gifts and talents and we have, you know, a life to live that doesn't have anything to do with a bleeding disorder. And I think, you know, I'm constantly encouraging people, including myself, sometimes having to remind myself, like we take our infusions so that we can live our life, not be completely consumed with this thing we call hemophilia, right?
SPEAKER_00:Absolutely. Yeah.
SPEAKER_02:So it's beautiful that your dad was like that. It wasn't, it wasn't really like his co constant conversations in the house, right?
SPEAKER_00:Oh yeah. And he would even um, I mean, he was he had at least one crutch most of the time from I think his 20s on. Yeah, even when my parents got married, he had a crutch.
SPEAKER_02:Wow, like in the wrong on their wedding day. Yeah, wow.
SPEAKER_00:Um so I never really it was just our normal. I never really thought anything of it. And when we'd be out in public at the mall or a gas station, if someone asked, like, oh, what happened to you? He would just be like, Oh, you know, playing football, or oh, I wrecked my bike. Like he would just make stuff up because he didn't want to get into the conversation, which I think was it it was good. He was lighthearted, had a good sense of humor.
SPEAKER_02:Yeah, full confessions of uh an adult with hemophilia. I have probably made up my fair share of stories too. I I can remember in school, you know, like when I was a kid, even like being on crutches, going to school and stuff, it was just so exhausting to try to explain it. I didn't know. And so, you know, you're like, yeah, it was POW and flew out of a plane, and you know, and everybody was like, whatever, you know, but you're just like, just leave me alone. You know, just it's just the thing. I'm sure yeah. Yeah. That's cool. So when when your dad was, you know, in his day-to-day and and even growing up with this, um, you know, did did he have times where he was down for extended periods of time that sort of influenced maybe your family activities and things that you were doing in your life as you grew older?
SPEAKER_00:Yeah. Um when I started playing volleyball in high school, I guess is when I really kind of noticed that he wasn't able to physically go to a lot of games. Like, you know, he couldn't do bleachers and stuff like that. So it really was dependent on where we were playing and the setup and kind of how he was feeling. Um, but that was really the only thing that I noticed when I was older. Um, every family has their hobbies and their traditions, and ours weren't running around playing football or going on runs and hikes. Yeah. So um, and we did we spent a lot of time outdoors. We'd shoot hoops and all of that. But um yeah, that was just our we found our things to do.
SPEAKER_02:Yeah, that's cool.
SPEAKER_00:Yeah.
SPEAKER_02:In your in your experience with growing up too, I mean, did you feel like I mean you said earlier that you didn't feel like it was really anything necessarily out of the ordinary? It was just your normal, so that's what you knew. But did you feel like that there was times, especially like playing sports and stuff like that, that it you started to realize like he wasn't able to be there? Was that hard for you?
SPEAKER_00:Yeah, around that time in high school, um, it got a little bit hard. Um I feel like I I understood why he couldn't, but it was still I felt like I I just wanted him to be proud of me, right? I wanted him to see what I was up to and be proud of what I was accomplishing. Um so that there were some tricky times. But he communication really him telling me he was proud and knowing what I was doing, and me telling him how the games went and him asking made a huge difference.
SPEAKER_02:Yeah, they probably still didn't they didn't have uh video uh YouTube streaming post.
SPEAKER_00:We didn't have yeah, my family didn't have a video camera and all that. So I felt like he was missing out on a portion of my life at that time, but we made it work.
SPEAKER_02:Yeah. Do you feel like when you look back on that, do you have like reg was it like regretful, or did you feel like that it just it just was what it was? And and you were able to just kind of realize that that that was his life and that you just had that was just the way it was for y'all. Is that yeah? How did looking back on it? How did you feel?
SPEAKER_00:Yeah, looking back, that's just that was our life, you know. Um he was supportive in the ways that he could be. And are the again the other hobbies that we did and he taught me a lot. He built a lot of things, we'd play a lot of board games, he loved to cook and all of that. So we had different ways to connect.
SPEAKER_02:Yeah.
SPEAKER_00:And I think that was key.
SPEAKER_02:That's so important too. I think, you know, for I know for me as raising my kids, especially, I felt, you know, when they were really little, like we, you know, they played doctor different, you know. It was like they had the doctor sit out and it was like, you know, I got a doll so we're gonna give an infusion today and there's factor. You know, it's like you're like, like as a dad living with you know, bleeding disorder, I just I my heart hurt a bit for that because I was just like, God, I don't want this to be their story. Like, I don't want them to have to think about hemophilia. Sure. And I can remember, you know, I went through a phase where I was in a wheelchair for an extended period of time, and I just felt so limited. I remember my wife, you know, I was just so I personally just devastated by the idea that, you know, here I am struggling, and hemophilia is hitting our family hard at this point in our journey. And I remember my wife saying, like, your ability to be present and to stay connected to your kids is all they're going to remember. Like, they're not gonna remember. And she had this little thing um where when I was in the wheelchair, I had both ankles that had that had been operated on um and fused, and one that had hardware removal. And then the other, my right elbow needed to be replaced, and it was just a devastating set of surgeries that had to happen all back to back. And um, so all I could, I was sitting in this chair and all I could use was one arm, my left arm, and I was just like, I'm useless. Like I I really did. I felt like as a dad and as a father, I just felt like I was just it was pointless, you know, for my existence in a way. And the emotional burden of that was super heavy for me having young children. And I can remember my my wife saying, Nope, let me tell you, she goes, This little left arm right here is gonna be the nook. And she was like, and my daughter Bella was really small at the time. She was just a baby, and so she stuck her in the nook, and she was like, See, she's gonna sit in the nook, and she's like, You talk to her, and she's gonna remember you being there for her. And I was like, I don't know. I mean, for me, it was just like this war going on in my mind and and my heart. And uh, but Tina to this day, my my Bella, who's 16 years old now, uh, she uh or 17, gosh, she's getting old. Uh, but she says she's she's to this day she remembers the nook, and she doesn't really have these scars and wounds like I was feeling like she was gonna have, you know, and so it kind of sounds similar that your journey was like this, like you knew it was present, but yeah, the war that was probably going on in your dad's mind was not exactly the same thing that you were thinking, right?
SPEAKER_00:Right. And our experiences shape who we become, you know, and who we are today. And I honestly um I had a very joyful childhood and I feel like I loved helping.
SPEAKER_01:Yeah.
SPEAKER_00:So, like, you know, from my dad's point of view, he might have felt like a burden, like, oh, I'm gonna ask my daughter to run into Walgreens again or whatever when I was old enough to do like little errands and him drop me off at the door and all that stuff so he didn't have to get out of the car. Um but I loved helping. And so some of the things that we think could scar us or burden us, um, I feel like it gave me a different perspective.
SPEAKER_02:That's so cool. Yeah. That's okay. It gave you purpose. And purpose. Yeah. Do you remember how old you were when you first started helping him do his infusions? Like you're probably pretty young, huh?
SPEAKER_00:Um, so I would I remember helping him pick out like veins and stuff when I was like five.
SPEAKER_02:Wow.
SPEAKER_00:Yeah. I just would think it was interesting, you know. Little kids are interested in everything, and dad's doing his medicine, and he'd be like, which one? And I'd pick them out.
SPEAKER_02:So that's so cool.
SPEAKER_00:Yeah.
SPEAKER_02:That's so cool. I uh I think, you know, again, it's just interesting to me as I as I talk to guys who are having kids and they're, you know, this this is something that's I think you know, all of us kind of struggle with a little bit is this idea of like not wanting to burn it was such a great lesson and such a great, you know, to hear from you, just of your memories of that, of being like, yeah, it was just part of our lives and it was just something we did. And and a good reminder just to stay engaged with your kids, right? Is there anything you would tell tell dads out there now, just from your dads walking through that with your dad? Anything you would encourage them to think about?
SPEAKER_00:Um just be you, be vulnerable, be be open. Um kids are resilient, yeah. And you know, your dad.
SPEAKER_01:Yeah.
SPEAKER_00:So there's no one, I mean, my dad to this day is the strongest man I've ever known, probably will ever known. He fought through a life of pain, you know, and witnessing that I think was powerful in itself. And um so I think just being you, being being vulnerable.
SPEAKER_02:Yeah. Wow, so good. So tell me a little bit about your journey. So you're you're in high school. Let's go through the timeline a little bit. So you you you're playing volleyball. That's like a passion of yours, right?
SPEAKER_01:Yeah.
SPEAKER_02:Did you start to see anything? I mean, you know, you at some point your dad had a conversation with you about the fact that there's a possibility, I mean, in in this conversation early on, is that you're probably a carrier. So obviously we know now, medically speaking, an obligate carrier. I really hate that word obligate. You're obligated to be a carrier. But there's a sense though that like you know that you're there's a connection, right? So did you feel like you started to see any symptoms or signs as a teenager that you might be having, you know, symptoms that that maybe you didn't identify right away, but like how was it you're playing sports? You're obviously very active, you know, and then as a young woman coming into, you know, your teenage years of having menstrual cycles and things like that, uh, did you notice any signs that made you curious that later made sense?
SPEAKER_00:Um yeah, it all makes sense now. At the time it did not make sense. I honestly just felt kind of like an unsolvable mystery um with little issues and little bumps in the road that where things just didn't go quite as planned. Um I had arthritis in my feet of a 70-year-old when I was I was told by an orthopedic specialist when I was 15.
unknown:Wow.
SPEAKER_00:So um I ended up having surgery to help with pain and to hopefully continue playing volleyball. And I had no treatment, obviously. So my foot got worse. And they didn't know why. I was on crutches weeks longer than the the surgeon planned. They couldn't remove the stitches when I went in. They had to like cut the bandaging after the surgery off because it was all hardened like a cast with blood. Oh my god. And the nurse like finally got it all off and was like, um, I'm gonna go get the doctor and came back. And they were like, Yeah, we can't take these stitches out. So there were signs. Um, and I just never knew why. So I kind of just felt like a weirdo. I just it was just all this like stuff that didn't really make sense. It didn't add up, and no one looked into it, into the why. Um so yeah, and my mom at that time was taking me to like all of my appointments and stuff. Um, my dad, by the time I got into high school, uh his mobility was was pretty low for getting around, and he had dementia, I think, to setting in from being infected with HIV. So my mom did a lot of that, and so my dad didn't really see with his own eyes, and so I don't think he couldn't piece it together either.
SPEAKER_01:Yeah.
SPEAKER_00:So yeah, and then with the menstrual cycles, all of that makes sense now. Looking back, um, they started me on birth control very young to help with the bleeding, and it did. It did work, it helped with the bleeding, but it was just a band-aid, you know. Then when I got a couple years further, when I had the foot surgery, I didn't heal properly, and then I had another surgery for them to fix it, and it got worse. So my gosh. Yeah, I was like, I'm done with surgeries. Done.
SPEAKER_02:And so that did that affect your ability to play volleyball and be active?
SPEAKER_00:Yeah, I could the pain was so bad after the surgery, it was probably triple what it was before surgery. Oh my gosh. My joint was completely frozen stiff um from uh the bleeding. So uh I never I never played after sophomore year.
SPEAKER_02:Wow.
SPEAKER_00:Yeah.
SPEAKER_02:Did it feel like you were losing a part of yourself, like not to be able to be active like that?
SPEAKER_00:Yeah, it did. Um I started picking up being active in other ways, just getting into a gym routine and trying to keep my body healthy. And exercise feels good. I it's really good mentally for me. It's huge. Um so I had to try to find things. I couldn't do lunges or planking or push-ups or running with my foot. So it was a it was a curveball. Yeah.
SPEAKER_02:Wow. So um going back to your dad's conversations with you though, he's the one that told you that you were an obligate carrier, right?
SPEAKER_00:Yes. Yeah, I think I can't remember exactly how old I was, but I'm pretty sure it's around when my period started. And he drew me a little diagram of stick figures and then the chromosomes to tell me that I carried it. And I think too, my brother and I had been asking him questions like, will I be on crutches when I'm older and stuff? So he felt like it was time. And he just told me that I could have a son one day. Not a daughter, a son one day.
SPEAKER_01:Right.
SPEAKER_00:Uh, that's affected like he is. But he did tell me medicine's coming a long way, and we just manage with with medication.
SPEAKER_02:Yeah. Wow.
SPEAKER_00:Life goes on.
SPEAKER_02:Wow, that's so good. Did that scare you that you might have a son with the same thing that he had?
SPEAKER_00:No.
SPEAKER_02:And why why not?
SPEAKER_00:Uh well at the time, I think because of my age was one thing. And my dad was a great guy. Yeah. You know, he was a great idea. Yeah. Yeah. Yeah. So like if I have a a son like my dad, I'm totally thrilled. Amazing. Yeah.
SPEAKER_02:Wow. That's awesome. Yeah, there's something in about that, you know, I always say that one of the things that's so amazing about people that have lived with chronic pain is that there's an opportunity that you're under so much strain and pressure for so long that the people that sometimes people take that as a tool to embrace and overcome adversity, right? And and I do think that probably more often than not, it's those people that have fought those internal battles, those internal wars and overcome them that become true heroes in life. And so when you have the opportunity to meet one of them or see one of them or walk with them or be related to one of them, it does seem to bring hope in a sense, because you're like, wow, like there's this great amazing man that I hope my kids could be like one day. You know, that's beautiful.
SPEAKER_00:Yeah, the insight, the perspective from everything that he had gone through. And I mean, all of all of us go through, you know. It really really adds to your character.
SPEAKER_02:Yeah. It makes you really focus on what matters in life.
SPEAKER_00:Yeah, the important things.
SPEAKER_02:So true.
SPEAKER_00:Yeah.
SPEAKER_02:So true. So let's keep going down the timeline a little bit. So talk about your journey. So we're we're we're you're high school, you're playing volleyball, now you've been disrupted because you can't play sports because of this thing. Still don't know that you're again, we're getting away from these terms, but you know, symptomatic is is the terminology that had been used in in the in the materials for so long. But still not putting two and two together yet. But now you're getting to the point where you're getting ready to graduate high school, you're going into college. How is is it still disrupting your your life? How are you feeling about that transition?
SPEAKER_00:Um, my foot has never been the same, but uh all the other things, I was on birth control, so uh things were pretty managed through college. And then um when I got into my mid-20s and met my husband, we started dating. Um, I of course told him about it, like just so you know, you know, like if you want to keep dating or not, I gotta make sure you're good with this. How is that?
SPEAKER_02:I mean, that's I know that's awkward for everybody.
SPEAKER_00:Yeah, he was very receptive. He um it didn't really faze him. Yeah, yeah, he's a tough guy too. I don't know. I I got lucky. Yeah, but um when we got married, we decided to go to education days with the one of the hemophilia chapters where we currently lived in Colorado. And he's in the military, right?
SPEAKER_02:Which is how you're gonna do it.
SPEAKER_00:Yes, we were yeah, we were stationed in Colorado. And um, you know, we were there for him to learn about what a son could potentially have and how he our one of our kids might be affected.
SPEAKER_02:And is this before you have kids? Yes.
SPEAKER_00:This was um around when we got married, the same summer we got married. Yeah. Yeah, I couldn't, um, you know, my dad passed away when I was about 18. And so all that time had passed with me being kind of, I felt disconnected from hemophilia altogether. So I wanted him to hear information from other people and from the experts to learn about it before we started trying to have kids. And uh when we were there to learn about our future kids, uh, this lady was like, Well, what's your level? And I was like, No, not me, you know, like we're family planning and blah, blah, blah. And she's like, Yeah, but have you ever had any like extended bleeding after surgery? Have you ever had your tonsils taken out or anything? And I was like, Oh, yeah. She was like, You need to have your level checked. So I went to my military doctor and uh told him what I was told. And you know, like I could be affected and I had prolonged bleeding after XYZ, and my menstrual cycle was a nightmare. And he drew me a similar diagram that my dad drew me, but showing me that I cannot be affected, that I only carry it. And so I kind of went back and forth with him on it, and then he ended up putting in the referral. So in Colorado, I had to see a military provider because of where our house was. Um, and so I had to have his referral to the treat hemophilia treatment center, and I got it, and um yeah, my level came back um, I guess symptomatic carrier. I was on birth control at the time, so it wasn't as low. And then uh several years after that, my we had moved to a whole different state state uh to North Carolina and I was pregnant, so I never got a level. Um and it took until I was 36 years old after having my son who has severe hemophilia to get my actual baseline level and get a hemophilia diagnosis.
SPEAKER_01:Wow.
SPEAKER_00:But if it was not for that woman in Colorado at that chapter event, I would have no idea.
SPEAKER_02:I mean, maybe I would down the line now, but wow and so when you when you hear about this, is it like what's going through your head about and your mind just about you're thinking about your foot surgery, menstrual cycles, obviously, but what are you I mean what are you thinking? Are you th like do you instantly put two and two together and go, oh my gosh, like this is my foot surgery? Or was it more like I don't know, maybe I need a doctor to validate?
SPEAKER_00:Um I thought for me it really connected the dots. All of it had to do with bleeding, uh, with a procedure or my menstrual cycle, and then um some bruising that I've had would last a really long time. Um so yeah, it really connected the dots for me. I was shocked, and uh, but it um it made my events as a kid make more sense, I guess.
SPEAKER_02:Yeah, did it feel validating like oh my gosh, this all like connects.
SPEAKER_00:Yeah, like I knew I was weird. There was something going on. I'm just kidding.
SPEAKER_02:You're normal in our world, yeah, exactly. You're like, yeah, you're part of the group. Yeah. Wow, oh my gosh. Like I could only imagine going that long too before. And so so you kind of breezed over having a son with with hemophilia, but that was sort of the impetus behind going, okay, now this is like this is this is what our life is, right?
SPEAKER_01:Yes.
SPEAKER_02:And so tell me a little bit about um, tell me a little bit about the journey of having children and then like just unpacking that, like how did that how did that feel?
SPEAKER_00:Um well, when we found out we were having my daughter, um, I was worried about her being a carrier, but I didn't really know uh the I guess how all of the stuff they're studying now, like how affected she could be.
SPEAKER_02:And you couldn't remember the stick name figure your dad drew exactly which stick was which.
SPEAKER_00:So um then when I had my son though, um, I guess we kind of went into like survival mode for a little bit. I was really honestly, it was weird, but I grieved my dad passing a lot after I found out Liam had hemophilia. Because I'm like, this is a genetic condition. Like, we need grandpa here. Like, I need like the my family here to help guide me, you know. I felt kind of like a fish out of water. What do I do? Like, I I knew um my dad managing very well on his own his hemophilia, but like, how do I do this with a baby, this innocent little baby? How do I keep him safe? Um, so that really really turned on mom mode and having to reach out to people in the same situation, um, other people with hemophiliac kids and educating myself with current studies and current medication and getting involved was a saving grace for me.
SPEAKER_02:And being in the military, you're moving around too. So it's not like you're at one HTC or you're at one doctor or even one chapter. You're you're having to find these resources on the fly, right?
SPEAKER_00:Um yeah. Well, so we've been lucky since we had the kids. We actually haven't moved. So we've been at the same HTC.
SPEAKER_02:That's awesome.
SPEAKER_00:Yes. My husband's career path shifted a little bit when we went to North Carolina.
SPEAKER_02:Okay.
SPEAKER_00:Um, so he made it so we should be able to stay there until he retires. What? So it was a great move for family, especially a family with medical conditions.
SPEAKER_02:Yeah, of course. Yeah.
SPEAKER_00:Um, so we love our HTC. The nurses are amazing. You know, kids know them by name, of course. And what a blessing. Yeah.
SPEAKER_02:So we know so many m uh military families, it's just like that they just know that like every few years they're moving, and it's been like such a such a hard thing to restart. But even then, you're you're educated about yourself in North Carolina, and then I mean in Colorado, and then you move to North Carolina, you get established there. And uh and so that's great that you had stable care there.
SPEAKER_00:Yeah, and reaching out on social media, I mean, it's really a great tool.
SPEAKER_02:It really can be.
SPEAKER_00:Just for connecting with people.
SPEAKER_02:You know, we've said for a long time that I, you know, that that it's interesting when you're dealing with any kind of rare disease, it makes a lot of sense to be able to connect online because you may only have a few hundred people in one particular state that has a specific diagnosis. But if you can connect in these groups, Facebook groups or you know, wherever, it seems like um that's a that's a great way to sort of connect. Obviously, there's misinformation out there too that you have to be careful of. But knowing your trusted HTC and getting, you know, having knowing where you're getting your source of your information is important. But also just building uh friendships in the community too. Did you find that building those friendships over time really helped you to feel more confident about what was missing that your dad wasn't there?
SPEAKER_00:Yeah, absolutely. Um just hearing other parents' experiences and that they made it through and um how they did it and I it's it's amazing. And also being a mom of toddlers is uh is a job. And it is a very anxiety-ridden job, even without hemophilia. So meeting other moms with little boys with severe hemophilia was like a relief to me. Like I didn't feel like I was the helicopter mom. Cause I mean, where we live, we don't have friends that have kids with conditions like that. So sometimes I'm always like, where's Liam? What's going on? Wow. What's he climbing on? And other people are like, oh, they're fine. They're just over there. And, you know, moms in the community get it.
SPEAKER_02:So it's very nice. That's so great. What would you say as far as like people might be going through that stage, the importance of being connected to even going to in-person events? Like you mentioned the chapter events. I know you've been to some national meetings. Like what role do you think that that how how important is that role in going connecting with people and networking with other moms and other people in the community for someone living with a bleeding disorder or newly diagnosed, even for that matter?
SPEAKER_00:I think it plays a huge part for me, especially after going to Hope Conference last year. Seriously, some conferences you go to and you feel almost like you have a couple blue days afterwards, because it's hard, it's emotional. You hear a lot of devastating stories and stuff. But the hope event was always just like glass is half full, and we have hope. And connecting with people and building the relationships is so good for mental health. The face-to-face and friendships and socializing. Yeah. And I think we can all use a little bit of help in that category.
SPEAKER_02:It's so true. I know it's been a lifeline for me. I always say that, you know, the best thing about being diagnosed with a bleeding disorder is the community that comes along with it. Yeah. And there's been such a, you know, um, you know, some of my absolute best friends in life are in this community, you know. And I have a lot of friends outside of this community too that are unaffected that we keep dragging into this community that uh we need their help too. So, you know, but it's it is that that surrounding of the communal support that I think that keeps us all afloat when we're going through difficult times. It has been my story, obviously, but um, but I think that's true for all of us. And I just like to encourage people anytime that there's there's questions, especially during those transition points, you know, it's like the new diagnosed, or even I mean, for you, it wasn't like you were blind going into this. I mean, even you knew even before you had kids you were self-educating, you had your dad's background, your own story. You know, there's like there's you you were equipped in many ways, far better than many people might be. And and and yet still that connection to other people who've lived that story, there is no substitute for lived experience, right?
SPEAKER_00:Absolutely.
SPEAKER_02:So good. My grandfather used to say all the time that that a man uh with an experience is never at the mercy of a man with an argument. And there's some people out there that just have like education, but then there's other people who have lived it.
SPEAKER_01:Yeah.
SPEAKER_02:And that lived experience is what creates wisdom, right? There's knowledge and there's wisdom. Wisdom is the living it out, right? And so I just think so often, like that's that's the people we we need that. And so, um, you know, shameless plug for hope conference for sure. I we're getting ready to uh experience that again here soon, and and I'm I'm super excited about it. But um, Orlando, Florida, not a bad place to be. Great place for families. Um, and also in November is when we do our conference. So, like, I mean, honestly, I think Orlando in August is probably the most miserable. But in November is extremely pleasant. Like, people don't go there that time of year. But I'm like, let's go there that time of year. So that's great. That's awesome. So I want to get back to um, you know, going through, you know, where you are now because you find out obviously your son is severe, you're treating him, you're on a treatment plan, but your daughter's not totally left out of this equation either, right? So let's talk about her journey a little bit. Where where are you where are you at with that? Because that's still you're kind of in the street. We start at the beginning. Yeah, let's go.
SPEAKER_00:Okay. Um, so when Amelia was born, I we had her factorate level checked, and it was normal. It was in the 90s, so they were like, oh, she's good, unless you have issues, you know, we don't need to see her as a patient and all of that. Um when she was a toddler, she had a lot of bruising. So I asked to bring her back in for testing, a post-birth like follow-up to get a baseline. And um we didn't get one the first try. She was she was a very plump, beautiful, beautiful girl. And then when we got to about three, they um tested again and she was still in the 70s. So fast forward a little bit, um I learned a lot through community events and going to conferences that for girls, really, it should almost be a standard to get the genetic testing done. Of course. Just so that you know, um, even when they're young, because some people are having symptoms with semi-normal levels. And so we pushed for that and we got a little bit of pushback from um our center, and we just kind of stood our ground and said that's what we want. And if anything happens down the future and she's having symptoms, we need this for insurance. And so we did it, and she was a confirmed carrier, and um just their most recent appointment this year, we got more of a true baseline on her. Um, it was the first time that she wasn't a total nervous wreck for a lab draw, and she requested that I do it. Wow, wow at the hemophilia center. So I was already infusing my son that day for his testing for his labs before and after. Um, so the nurse was like, sure. And so I did her lab draw and it came back lower, so a better baseline. So um it's been a road with her, but we have made so much progress thanks to the community and um learning continuously.
SPEAKER_02:That's so good. So let's talk about your care, because I mean, it's clear that caregivers put themselves last oftentimes. So you're a mom, you're carry caring for these two kids, you're you you're you're married, you got a lot going on, right? And so with all of this going on, how about you? Where are you at?
SPEAKER_00:Um I am just trying to blaze through, yeah, you know, um keeping the kids safe and healthy and trying to participate in things like this to help other families.
unknown:Yeah.
SPEAKER_00:Um I think the biggest thing for me to stay grounded is exercise and meditating. And I have a great therapist. I love my my mental health appointments.
SPEAKER_02:That was awesome.
SPEAKER_00:Um, I really got in a routine of that when my husband was deploying a lot in Colorado. Just um the fears of him being overseas and all of that, and now it's helping me in in other ways.
SPEAKER_02:So that's so good. Yeah. And are you getting treatment on on demand or regularly, preventatively? Where are you at with treatments?
SPEAKER_00:Um, I'm on demand.
SPEAKER_02:Okay.
SPEAKER_00:So um just for little procedures um and stuff like that is what I've what I've needed factor for.
SPEAKER_02:Yeah. And and having that knowledge of knowing where your levels are at and what your needs are when anything arises or anything goes kind of out of whack or abnormal, does that give you a sense of confidence to know how to even speak up and advocate for yourself in the midst of like transitional times or any things that may come up?
SPEAKER_00:Yeah, I would say that I'm still learning. I feel like I'm learning about my body because I went so long without any treatment. Um but yeah, the biggest the biggest thing is to document pictures and documentation and sharing that with your provider and getting their input on how to best move forward.
SPEAKER_02:Yeah. So good. And and also like, you know, I I I do think that for the sake of documenting, like this is something that we find is something really difficult from an insurance point of view. Uh it's super critical that you journal those things as they when things pop up and occur, we find that sometimes those journals are the only things that allow you to sort of overcome even some of the insurance questions. And when you have a son that's severe, sometimes you're it's just kind of in inherent because there's just always something going on. But for yourself, you know, I I have found that that in parenting, you know, I I have four kids and two of which are daughters who are affected as well. And it was a very difficult journey getting them diagnosed and getting them on the right treatment plan and so on. And in that journey, one of the things that I've found is that me trying to help them has also helped me take care of myself better to some degree. Yeah. Have you found that to be the case also? Like make you a little bit more aware of what you need to do for you.
SPEAKER_00:Yeah, absolutely. And also it's uh more of a a drive, internal drive for me to make sure that I'm safe as well because I need to be there for them. Right. It's different than before kids. Like, oh, it's just me. Like, let's go do whatever and I'll be fine. Right. So yeah, it's it's definitely different now.
SPEAKER_02:Yeah, yeah, that's good. I want to talk a little bit about um, you know, going back to, you know, uh the marriage part of the journey, because obviously there's there's a lot to focus on with the kids, there's a lot to focus on with yourself, but being married is its own full-time job, and there's a lot of worries and fears there too. Obviously, you guys handle that amazing. Your husband's a rock star because he was like, you know, I'm gonna learn this, you know. Um, but what what tips or any advice would you give married couples out there who are also just trying to learn how to navigate this? Because there's there's so much within the communication for each other. And of course, your husband works in a high-demand job where he's putting his life on the line. He's involved very, you know, with with deployments and things like that. So, so, you know, how do you manage that in your own communication internally and and just keeping him aware of what's going on and involved too?
SPEAKER_00:Um, I guess, like you said, communication. Um, I fill him in on the appointments, and we're very thankful for my chart because he can just look at like hard copies of like notes and test results, and I can explain what they said um in relation to the appointment, and it it's easier for it to make more sense. So it can be tricky when he has longer trips and something happens. Um, but you know, you do the the best you can.
SPEAKER_02:Yeah, yeah, it's so good. Yeah, it's so good. I think that a lot of people uh before they get married worry about how am I gonna manage this condition with a partner, how am I gonna manage this condition with someone else. That's tough. Just I mean, any marriage is you know, there's there's rough spots for everybody, right? It's difficult to walk closely together, no matter who it is. And and then and then you throw in like hemophilia in the mix and then children and then all of the other complications. It is not easy. Yeah, and um, I do think communication plays a huge role in that. I love what you said about your dad too, just that he was just present and he was aware. I think that there's a sense of that too, is it like you we can't solve all the problems, but we can be aware and we can be fully present in that, you know?
SPEAKER_01:Yeah.
SPEAKER_02:One of my um favorite quotes is from uh a man named Jim Elliott who said, Wherever you are, be all there. And there's something about just being present. Like I think sometimes like it's fear is is a scary thing. It's one of those things where like we avoid pain, we avoid painful emotions, we avoid all kinds of things, but it's just like you working out. It's like there's this sense of like, I know it's good for me anyway, so I'm gonna I'm gonna do this, I'm gonna commit to that, you know. And and the same is true about like relationally, I think is that we we say sometimes like I know this conversation be hard, like I just got a bad report from the HCC or something. You know, it's like, but we're gonna have this conversation anyway. As a mom raising a son with a bleeding disorder, how has that been different in contrast from watching what your dad went through where he was on crutches all the time versus your son who's had treatment since the day he was born?
SPEAKER_00:Uh, it's pretty miraculous. I always wonder what my dad would say or like what he what he's thinking, you know, looking down on us. Um but I just I feel honestly in the circumstance we're in, I feel I feel really blessed. I mean, we have treatment, it's manageable, and he's gonna be a healthy kid. Yeah, you know, like yeah.
SPEAKER_02:So, you know, one of the things that I think a lot of the people in the the community have, you know, talked about struggling with sometimes is that there's still an opportunity for you know battles that you go through internally that the rest of the world around you doesn't see, right? We might call that like invisible disease. But generations ago that it was kind of more obvious, right? And have you noticed that it's been at times hard to sort of like cope with it being invisible in some ways?
SPEAKER_00:Yeah. Um, you know, I never really thought of hemophilia like that until my son had his first major bleed. He had a hip bleed last fall, and it was a couple weeks before Halloween. So um we took them trunk or treating at my daughter's school, and I was pushing him in the stroller instead of a wheelchair. And um thankfully I still have the stroller. And people just were kind of looking at us, and my kids are very tall, we're a tall family, so he looks older than he was. He was about to be four, he was three at the time. Um, and they just kind of would look and they wouldn't put the candy bucket towards him for him to reach the candy, and he'd be kind of like, Oh, I can't see what's in there, what is there? And everyone would just kind of look. And so that I honestly I left um that event a little upset and I was kind of heartbroken for him because he was hurting so bad. And you don't want people to coddle your kid, and you don't want them to stand out either, but just the understanding so that he could feel like the other kids and pick his own piece of candy and things like that. It was very eye-opening um for me as his mom.
SPEAKER_02:Did he like process any of that with you? Did he feel the same?
SPEAKER_00:Yeah, I think he he told me actually that he didn't he didn't really like it. And he asked me why he couldn't pick all his candy. I know it made me sad. Um yeah, it's just it's like we need to mark it as a wheelchair or what, but then you don't want him to stand out either. So you want people to know but not um go over the top.
SPEAKER_02:Yeah, I guess.
SPEAKER_00:Just the awareness.
SPEAKER_02:Yeah, it's a weird thing having to be empowered to be able to explain that there's limitations without overdoing it.
SPEAKER_00:Right.
SPEAKER_02:Right?
SPEAKER_00:Yeah.
SPEAKER_02:Because you don't want you don't want like pity.
SPEAKER_00:Right, exactly.
SPEAKER_02:And you don't want him to feel like he's gotta be less than.
SPEAKER_00:Yes.
SPEAKER_02:But simultaneously, like there are times where you know, there's a limitation and it's okay.
SPEAKER_00:Yeah, absolutely.
SPEAKER_02:Yeah. That whole invisible disease thing is like a really I find it to be really probably more challenging now, especially for you know, this we have this whole new generation of people now that are just been profi their whole lives and never had to deal with the public interaction really, you know. I can remember um when I first started college, like I didn't want, you know, starting over, new school, obviously, and I didn't want anybody to know. I mean, I didn't want anybody to know. And so every time I had to be on crutches, I just like hid. You know, I just didn't want to be out in public, you know. And uh my friends would be like, you disappeared for like three or four days or five days, like where'd you go? You know, and it's like, well, I was sick, you know, and I would just leave it at that, you know. Yeah. I can remember actually, um, even as a young adult, um one of our one of our early uh board members was a friend of mine from college, and he was like, he was like, Yeah, I didn't like for the first 20 years I knew you, I didn't even know you, I didn't even feel it. You know, it wasn't until you were like going through surgeries that I realized that and he thought I thought you had something really horrible and you were dying, you know. And I was like, gosh, you know, there is a happy medium somewhere in there to be able to sort of explain to people and advocate, share your story, right? Yeah, and to be confident in your own skin. I think we all have to deal with that, even if it's not about a bleeding disorder. It's like you have to get to the place where you're comfortable in your own skin. Yeah, and you are who you are. And we were talking about being tall people earlier, you know, it's like tall people problems, right? Like you have to get comfortable in being a tall person, you know, and and simultaneously at the same time, like you don't want to just you you're not you don't want everybody having to accommodate for you, you know. And so as your son has grown older, how do you feel like has that has that come back up or is that something you're still processing through? I mean, I'm he he will have, I'm sure, repeated, you know, conversations about that. But do you feel like that he's he's growing in that too?
SPEAKER_00:Or yeah, um I kids are resilient. I think that he um as long as he can, you know, participate with the other kids and all of that. I think his from the hip lead too, his understanding, I think, um, which was is good and it's also hard to see as a parent, his understanding of his condition of the hemophilia is a lot broader now.
SPEAKER_01:Yeah.
SPEAKER_00:Um, so that's good. Yeah, I think. And yeah, I don't I'm trying to teach my kids um be kind to everyone you meet. Everyone's fighting a battle that you know nothing about.
SPEAKER_01:So true.
SPEAKER_00:So that's really important for invisible diseases. And some people need help with their balancing their sugar, and some people need help with balancing their factors. So, you know.
unknown:Right.
SPEAKER_02:Or in my case, both. You gotta balance all of it. That's great. I I you know that with I just think with it goes back to the community thing. With your experience, having your dad, having the community, having all these resources around you, you can't help but but no matter where you turn, you're gonna be he's gonna be great. He's gonna be safe. He's gonna win. He's gonna do so, he's gonna go so much farther than even your dad was able to go. He's gonna do so much more. Yeah.
SPEAKER_00:We want them to thrive over survive. Yes, absolutely.
SPEAKER_02:Yeah. Might have seen one of those.
SPEAKER_00:Our favorite t-shirt.
SPEAKER_02:That brings me kind of to to one of my last questions, which was really, you know, thinking about your dad. Um you know, uh, I you know, it it just begs the question. I mean, like, what do you think that that him saying all of what, you know, what do you think he would think about all of what you've walked through so far?
SPEAKER_00:Uh I I think I hope that he would be uh proud of everything that we're doing for the kids. And, you know, you do what you can to keep your kids safe. So um in bringing awareness to hemophilia and women with bleeding disorders, I think he'd be very proud. And he'd probably say, um, in regards to taking care of my son with severe hemophilia, he'd probably say something like, You were built for this or something like that. He always thought I was gonna be a nurse or something.
SPEAKER_01:But there you go.
SPEAKER_00:What do you know? Now I do phlebotomy without phlebotomy school.
SPEAKER_02:So that's awesome. Yeah, that's so good. That's so good. Uh, you know, as far as you know, the you know, this really your story is so um, you know, hemophilia on every side, right? Your dad, your son, your daughter, yourself. When I think about women, you know, and the and just the journey of unpacking this discovery of like, okay, I'm not just someone that carries a mutated gene. I'm actually somebody that experiences internal bleeding. I'm someone that it that and and we know that I hate to say that the s we used to say all the time the science hasn't caught up. I I think that's false. I think the science has caught up. I just think that you know the the system hasn't caught up is probably a better way to think about it. But when you think about that, you know, like what would you say, what advice would you give to women who are out there that have been told that they're just a carrier?
SPEAKER_00:Um I would say that if you think anything might be abnormal, to document it. Take pictures, take notes. Um if you have, if you sprain your ankle, you know, like document the healing process to make sure that it's within normal limits and you're swelling. If you have swelling, you know, snap pictures of it because you go into the doctor after it's healed, they're not gonna know how to handle the information if they don't see it. So um I think that that's really important. And then also tools. There's tools in the community. There's a lot of great resources on the Hope website, there's a lot of great resources on the National Bleeding Disorder website, MBDF. Um, they have a new period tracker and all kinds of stuff that you can use to make sure that you're within normal limits and at least track that so you have information to bring to your provider to work with them to see if you need treatment or not.
SPEAKER_02:That's so great. I'll make sure that we put those links in the descriptions on this podcast episode as well so that people can go to them. But there really is a great tracker that we were talking about earlier about the menstrual cycle tracker that I think it's on HFA's website, Human Philly Federation.
SPEAKER_01:Yes, yes.
SPEAKER_02:And they have a they have a really great way to sort of document and track, you know. I we we have one of our board members is actually an obstetrician, and he discovered so many women in his practice that were undiagnosed with bleeding disorders. And he helped a lot of women get diagnosed before he retired. But one of the things that he says all the time is that it's it's length of day, like number of days, but also volume. And you have to be able to, when it comes to menstruation, a lot of people only believe that it's like, oh, this is just we just bleed heavy in my family or something like that. But it's like tracking that stuff and and forming a language even around what that is for what that means for you, I think is important.
SPEAKER_00:Absolutely.
SPEAKER_02:And um, he talked a little bit about in a in a matter of fact, we have another podcast episode that uh we'll link to this as well that had where he talked a little bit about like if you're more than they say three to five days is normal, but like if you're more than three days, you should start being suspicious. And then if you're changing, you know, pads or tampons or whatever uh frequently, like you need this is something that you need to be thoughtful about, right? Absolutely investigate. Yes, ask questions, get curious.
SPEAKER_00:Yes, yes, get curious.
unknown:Yeah.
SPEAKER_02:And and I know it's it's awkward too. I just you know, I I I'd like to just shameless plug for all the guys out there that might be listening to this. Like, sometimes it's a little bit awkward to have these conversations, but I I'm confident that your dad, if he had the knowledge and the opportunity, he would not have shied away from this. He would have been like leaning into this conversation, right?
SPEAKER_00:Yeah, it's medically necessary.
SPEAKER_02:Absolutely.
SPEAKER_00:You know, you have to think of it as as medicine and taking care of your health, even though it is your period. I mean, that's that's scary. It happens every month. Right. So it could be bad. Yes. Yeah.
SPEAKER_02:Yes, you have a bleeding episode every month. That's one of the things I think we're trying to also help maybe we're we're hopeful to move the progress in the direction of this concept that um we just recently had a had an interview with um a leading f research physician who talks about this very, very thing about how important it is to understand that for women that you have a bleeding episode every single month. And so often it's sort of like pushed off as being, yeah, that's just routine. But if it's abnormal, is that root is that normal, you know, and so you but defining the difference between abnormal and is very personal. Like you have to get a language and comfortable with being able to talk about it in you know, with your physicians and and that. So uh, you know, I I just think that there's so much more to come. And when you think about the future, you in your lifetime, Amanda, you have seen so many changes from your dad, like the way your dad was treated, the way he took care of himself versus the way your son is treated versus the way you're treating. That's amazing. Like when you look forward into the future and think about your kids and maybe their kids and the future of of the bleeding source community, I mean, what do you think?
SPEAKER_00:Um, I think that we have a lot of a lot of hope. I think that we have a bright future. We have a lot of treatment options. They're coming out with gene therapy. Umophiliac's lifespan is greatly improving. Again, I think my dad would be amazed. The things that my four-year-old does and just hops up out of bed the next day, you know? It's it's great.
SPEAKER_02:It's amazing. Well, thank you so much for just your courage and your willingness to share your story and your journey with us. Um you know, I know that it's there's a lot to a lot of vulnerability that it takes and to to share, you know, the details of what you've walked through from, you know, uh just just the hero that your dad is and was, and and just the warrior that you've become. I know he's proud. Oh, thank you. I'm so thankful to be able to walk with you and get to know you. It's funny, you know, you you you think about it, we would never have met, you know, many of us in this community would never have even met had we not had this diagnosis. So I know. In a sense, it's grateful for I'm grateful for something that's really brought us all together, right?
SPEAKER_00:Absolutely. Me too.
unknown:Yeah.
SPEAKER_00:Thank you for having me.
SPEAKER_02:Yeah, of course. Well, I really want to say a big thank you to Amanda and to uh everyone who's been watching. If you haven't yet liked and subscribed, please do that today. And we'll see you in the next one. Thanks again for joining us for this important conversation. I hope you got a lot out of it. I certainly hope that you get a chance to share this with a friend or family member who might be experiencing similar symptoms. You can always like and subscribe to help us to encourage the algorithm to pass this information on to more people just like you. And we'd love for you to continue to listen to more episodes coming up on women with bleeding disorders and more important content that we hope to provide you over time. Once again, I want to say a big thank you to our episode sponsor, Janintec, for making this episode possible. Without their help, we literally could not do what we're doing. We appreciate their support, and we hope to see you in the next one. Take care.
