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Hello and welcome. Uh, today we're really honored to be joined by Benton, who is a patient who's experienced hemophilia and he's gonna share a little bit of his journey, his experience with us, and we do this because it's really important that we bring back our education to what this is all about, and that is a patient and a person at the end of the day. Um, today we wanna move beyond clinical guidelines to talk about that human reality. Um. Benton, thank you so much for, for joining us, and we really want to start at the beginning, which is the diagnosis itself. Um, can you share a little bit about that diagnostic journey and if you're ever diagnosed with mild or moderate hemophilia, um, did that, um, and, and sometimes that implies that the condition is easy to manage or carries low risk and perhaps could you also touch on does that perception match with your experience? Yeah, well, um, I was diagnosed when I was around 4 years old. I was, um, I was a pretty active kid, right? And I was always running around. I was always getting hurt. My mom would notice that I would always have a black eye and it would always stay for a while or just little things like that, right? But um, It was one day I was, uh, I bit my tongue when I was younger. And it just kept bleeding, kept bleeding, kept bleeding. And uh it actually wasn't a doctor, it was an EMT that figured it out. That I had hemophilia. Um, from my mother's side, my, my, uh, my grandpa had it. And I am mild. I'm 8%. And um I really haven't. I really haven't ran into many issues that I, I've been treated, you know. Not with that much care because I am mild. Um, There was one instance where I, I have a factor, right, to, uh, that's the name of my, my medicine is Advair. And uh there was one time where I didn't get my medicine. And my mom, she was always super good about um making sure I was taken care of. So we, we made, we made sure to go to um UCLA and Children's, so that they're, they're always on it. Um. So yeah, I, I really Usually when I say hemophilia in a doctor's office, I'm, I'm treated the way I'm supposed to be treated, which is good, and should be the case every time, um. So yeah, so that, that's what I would say about. That personally. What I'd love to talk about is your, your, your daily lifestyle as well, uh, Benson, and best practice suggests that we should personalize treatment based on activity level and lifestyle, not just factor levels. How does hemophilia impact your ability to, for instance, play sport or participate in gym class? Yeah, so personally, um, I, I love sports. It was kind of my getaway as a kid, um. Uh, just soccer, basketball, football. Every day I was doing something. I was, I was playing with a ball somewhere, and I, I really, I made sure that Humophilia wouldn't get in front of my like emotional, the emotional side of me, you know what I mean? I wanted to make sure that I was happy at all times as a kid, you know, I wouldn't want it to get in front of me. So, um, and luckily I am mild. I know if it was severe, I'd be, it would be different, but I made sure to Do the things that I, I still want to do as a kid, you know. If you love soccer, you love football, and you're a kid and you have hemophilia, play soccer and play football confidently, you know. And if you play scared, you're probably gonna get hurt. That's how, that's how I kind of live, you know, and um. Yeah, so I've always been really active. I'm in the gym nowadays a lot, like 66 days a week. And, and be mindful, but confident. You know, I, I don't go out there. You know, jumping around, trying to land on your head, and when you're, when you have hemophilia, you know what I mean? Don't, don't be, don't be dumb about it, but, um, yeah, I, I would say, dude, if you, if you're a kid and you have affiliate, go out there and play and Have fun and don't try to You know, Stop that, you know what I mean? So, yeah. Um, I also wanted to really touch on the long-term picture as clinicians we worry about. What we call subclinical bleeds, bleeding that happens without obvious pain but damages the joint over time, um, and joint health is something that's often actively monitored, um, by healthcare teams. Um, how's, how's your experience been there? Has that, has that happened or, um, does, does that monitoring only come up when you have an acute injury? It really only happens when I have an injury, um. I haven't really had any long-term joint issues. So, I, I can't really speak about how to prevent it long term. I'm going to be completely honest. I've only really dealt with it when I, I've hurt, you know what I mean, like my knee or my elbow or something like that, you know. And Communication is also really important and uh and absolutely key here. If you could give one piece of advice to the hematologists and nurses. Across the country who are watching this, how do you best partner with a family like yours and with you as a patient when it comes to hemophilia and your care? Uh, I'm, I'll be honest, I'll just say be, be personable with the, the patient. Um, And yeah, just be extra cautious. You know, because some injuries are not treated right away, um, it can, it can have weeks of harm for that. I broke my ankle one time and I didn't get it, I didn't get my medicine right away. I was probably out for another two weeks because of it, because I waited. Um, So yeah, that's what I would say. I'll just be cautious. Make sure to give the medicine 100% of the time. Even if you feel 50/50, I don't know, just give it. And Yeah, uh, that's what I would say personally. Um, Benton, thank you so much for joining us. Your insights are really valuable, and they remind us that treating the patient, not just the lab values, is what really matters. So thank you so much for joining us for this discussion. Um, and we're really passionate that every patient, uh, that we look after, uh, we look beyond the label and provide the comprehensive care that they deserve. So thank you.