HemoLife Podcast
Welcome to the HemoLife Podcast, where we explore how to live an elite life while managing a bleeding disorder or other rare conditions. Dive into educational, entertaining content with stories of high achievers, expert advice on mental health, nutrition, and exercise, and the latest relevant news to elevate your mind, body, and soul.
HemoLife Podcast
Hemolife After Dark: Young Voices, Bold Futures
Late at night during the Coalition of Hemophilia B Conference in Orlando, host L.A. Aguayo sits down with two remarkable young men – Daniel (19) and Ryan (18) – for what becomes one of the most authentic conversations in Hemolife Podcast history.
What starts as a casual chat about conference activities quickly evolves into a profound exploration of generational progress in hemophilia treatment. The stark contrast between L.A.'s childhood experiences – being strapped to hospital beds, enduring spinal taps, and missing weeks of school – and the relatively stable lives these teens lead demonstrates how far medical advancements have come. Yet amid this progress, timeless challenges remain.
Daniel candidly shares his ongoing struggle with needle anxiety, revealing how watching his younger brother self-infuse fills him with both shame and determination. Ryan, meanwhile, discusses his passion for high-adrenaline activities like dirt bike riding, challenging the bubble-wrapped stereotypes often imposed on those with bleeding disorders. Both young men express thoughtful skepticism about trying the newest subcutaneous hemophilia treatments, showcasing their engagement with their own healthcare decisions.
The highlight comes during the "Bleed Battle Royale," where each participant shares their worst bleeding episode. Through laughter and winces, a beautiful realization emerges – while L.A.'s generation suffered more severe crises due to limited treatment options, today's young hemophiliacs have opportunities to live fuller lives with fewer limitations. Rather than resentment, there's genuine celebration of this progress.
Most impressive is these teens' awareness of their responsibility as role models for even younger community members. They discuss innovative ideas for better community resources and reflect on what they wish they'd known sooner – that limitations often exist more in perception than reality, and that accepting one's condition is the first step toward transcending it.
What has your journey with a chronic condition taught you about resilience and growth? Share your story with us and subscribe to hear more perspectives that challenge conventional thinking about living with rare disorders.
Thanks for tuning into the HemoLife Podcast. Be sure to subscribe, leave a review, and share this episode with someone who needs a spark of hope or encouragement. Follow us on Instagram @HemoLife_Podcast and YouTube for updates, guest highlights, and behind-the-scenes content. New episodes drop regularly—your story matters, and this is just the beginning.
Welcome to the Hemolife podcast, your gateway to transformation and empowerment, hosted by Elia Aguayo, we're diving deep into the world of rare disorders, unlocking the full spectrum of your potential. Each episode, join us as we connect with pioneers, wellness experts and true survivors. They're here to share powerful stories and invaluable insights, from mental resilience to physical health. Community news to life-altering strategies. At Hemolife, we provide the tools you need to excel and inspire. Prepare to elevate your life, learn, laugh and grow with us. Let's embark on this journey together.
Speaker 3:What's up guys? This is LA, your host of the Hemo Life podcast. This is going to be a very special episode from the Coalition of Hemophilia Beat Conference in Orlando, Florida. We got a chance to meet some really cool guys. We've got Daniel over here on my right he's 19. And then we've got Ryan, who's 18 years old, and I think that we have a really awesome show for you guys tonight. Kind of go over some different perspectives, have a little fun. It's what time is it? It's probably it's almost 11. 10.44. It it's probably it's almost 11 o'clock. Appreciate these guys for joining us late. We're going to call this the Hemolife After Dark podcast episode. So first off, we want to talk about the event a little bit and how it's going. I think it's been an amazing event. I just got back from HFA and I don't know what they did here, but just the vibe, the environment, maybe it's just a mixture of the people, it just was a great turnout. I'll start with you, Ryan. What do you think of the event so far?
Speaker 4:So, far, a lot of these sessions have been very great, Like Alex's drumming session. Good way to express yourself, good way to go about your day.
Speaker 3:Will you explain that a little bit more, like what was that session about, because I missed that one.
Speaker 4:Okay, so he is a emcee. He does a lot of stuff with the coalition. The point of it is to become a stronger bond, relate with each other and find out what people are into. Kind of put you on the spot, get you a little uncomfortable and get you up to where you would like to be Kind of like help you build some confidence a little bit.
Speaker 3:That's awesome. Yeah, I got a chance to meet Alec in the hallway. Ryan actually introduced me to him and he was such a cool guy and he's got some amazing connections and he's got about close to 40,000 followers on Instagram. He's connected with people like David Goggins, lewis Howes, mel Robbins, dr Joe Dispenza, which is a huge one, because we just did an episode on reviewing Dr Joe Dispenza's book. So this guy is someone that you definitely want to be connected to.
Speaker 3:And it was really cool because, just to divert a little bit, he put me on the spot. We were. He was trying to teach me how to kind of get on his level, level up a little bit when it comes to social media and branding, and he pulled, he grabbed my phone from me and he was like Alright, talk about the humanEMA Live podcast right now. And he just put me on the spot in the middle of public and I was just like shit, I'm nervous because I don't do that Like you guys see me on the podcast and you see, but a lot of it is like a lot of different takes. You know, I'm not out in the public where other people are watching me, so I was nervous, but his point was. You have to get uncomfortable in order to succeed and to level up, and if you're not willing to put yourself in uncomfortable situations, then you're never going to grow and get to that next level.
Speaker 3:Check out Alex page on Instagram. He's going to be the one. You probably saw his promotional video. He did a promotional video for this episode, so check him out, give him a follow. Amazing guy. But what else? Anything else about the hemophilia V coalition so far that you've enjoyed? I?
Speaker 4:have enjoyed a little bit of the teen, tweens and kids rooms, me and a lot of the parents and helping out with a lot of the kids. Yeah, just being a part and being a role model is a great thing. You get to show what this event is all about.
Speaker 3:Yeah, I think being a role model is a huge thing. I mean, I started this entire journey for myself because I didn't know anyone like me and I was going through so many hard times and I was just wishing that I had some kind of mentorship or role model in my life to show me what I was capable of. I think that's one of the biggest things that we suffer with being told from birth you can't do this, you can't do that, and you start to have limiting beliefs on what you can accomplish. And I went on this crazy journey of breaking those limited beliefs and it's really, really hard. But if we have good role models, like you know, these two guys here, who are willing to step up and break those, you know, limiting beliefs that amazing things can happen in the community. What about you, daniel? What do you think? How do you think the event's going so far and have you attended any like?
Speaker 2:breakout sessions or anything. I mean this event, the coalition. I mean I'm gonna say this is my first time being here for the coalition for this symposium. Um, it's really nice because it's so many people from different you know states, you know I've met people from massachusetts, new york, california and texas. Yeah, and just seeing everyone come to one spot and get to know each other, talk about each other and find people your own age and get to know them and build friendships, yeah, and I think this is such a great thing that the coalition is doing. It will help, for sure, for younger kids and for even us. I mean me and you, ryanyan.
Speaker 3:It's gonna help us for our life yeah, have you been to a hemophilia b conference before, or is this your first one?
Speaker 2:I have been to a hemophilia b conference before um within the wisconsin chapter.
Speaker 3:Okay so what's that like? Do you get like a certain feeling like when you go home, like after this, like like man, I needed this, like this, this like helped my soul, this helped my mind? Like do you get like some kind of rejuvenation after attending things like this and gathering with people like yourself?
Speaker 2:yeah, I mean, um, after going to you know the conventions and you know, getting home you soak in everything that you've experienced over the weekend and just be like, wow, this was really great. Hopefully I continue to do this. Or like, as a family we can continue doing this Because as a family, it helps. You know, going to these conventions with you know your siblings, even if they don't have hemophilia, yeah, it helps learn. Everyone learns and grows together.
Speaker 3:That's cool. So you have, we all here have B. That's why we're at the B conference. Are there others in your family that have a bleeding disorder?
Speaker 2:Yes, my two younger siblings have hemophilia B. My younger brother has hemophilia B severe, and then my younger sister has it. But I was the first one in my family to be diagnosed with hemophilia B, but I wasn't the first child that my mom had. I have three older siblings and, um, when I was born it was a tough thing that my mom um found out with you, feel it? Yeah, um, obviously it's a scary situation when you find out. Yeah, one of your kids is having a bleeding disorder where they bleed very abnormally. Just being the first, it was a bunch of roller coasters. Yeah, yeah.
Speaker 3:What about?
Speaker 4:you, ryan. Do you have others in your family? Yes, my mother and me are the only two diagnosed in the family with hemophilia. It is something that challenges you.
Speaker 3:What kind of things were you told in the beginning For both of you guys? Were you guys taught limiting beliefs? You guys, you can't do these things like you. You're basically in a bubble or you have to wear knee pads or a helmet. Was it ever like that?
Speaker 4:with you guys, your family, all throughout um elementary school I was forced to have helmet, knee pads, elbow pads and wasn't allowed to do the more dangerous activities. And as time went on and they started, my school started realizing that it doesn't affect me in a way that they thought it did. They stopped limiting me and went on from there.
Speaker 3:Yeah, what about you? Were you guys like was your mom like super scared at the beginning and kind of like did everything to protect you?
Speaker 2:Yeah, when I was younger, I was wearing a, I had to wear a helmet, so there was a few pictures um of me with this little time it was so cute.
Speaker 2:Just, I've got something like that too. It's funny. Yeah, I was told, um, you know, I wouldn't be able to do sports, and I mean for me that kind of really hurt it because I really wanted to. Yeah, but I'm finding a different way to still be a part of sports, but within, like student managing, or I want to try to be up in the business side of it, yeah, so that's where I'm working.
Speaker 3:Yeah, that's awesome. That's awesome. Yeah, so you said, um daniel said he's going to be going into like sports management and basically pivoting a little bit, because I was the same way. I would miss so much school and I would just I would have the worst leads ever and I mean I probably averaged missing three to four days a week and I would sit home all day long and just watch SportsCenter reruns over and over and for some reason it was just like nobody in my family even loves sports. But for some reason there was just something inside of me where it's like this is my passion. I love watching people perform at a high level, and it's like I wanted to participate and I'd see all my friends outside playing and stuff and so. But yeah, I mean me personally. I had a lot of resentment towards that, where I I was going to push myself, no matter what I was like I'm, I don't care what my parents say somewhere or the other, I'm going to find a way to play sports. And it sounds like you kind of were just like you know, okay, I'll, I'll pivot a little bit and I'm still gonna, you know, live out my passion of sports and I'm just gonna do it a different way, which is also really smart, because you do a lot of times when you're young, like myself.
Speaker 3:I made some crazy decisions. I fought in the Golden Globes of St Louis when I was 19. I was at one of the lowest parts of my life and I was like I don't even care if I die. I trained for two years, fought, ended up going to the Golden Globes fighting the best fighters in St Louis, broke my nose, got severely injured.
Speaker 3:That's a story that doesn't get told too often, but now, as an older person, I mean, I don't know, that sounds bad, man, I'm that old, am I that old? 37, 37. Hey, I'm getting old. But now, looking back, though, I'm just like my ankles are in bad shape, my elbows are in bad shape. So, yeah, I pushed my limits and I proved some stuff to myself, but there was a cost to that. So I think there is something to say about being intellectual enough at a young age to be like listen, I want to live a full, healthy life. So I'm going to pivot. I'm still going to live out my passion and do something different. So I think that's really cool that you're doing that. Yeah, what about you, ryan? What are some of your passions?
Speaker 4:I'm big into riding dirt bikes um playing football, kind of the more adrenaline rush kind of sports you ride bikes, see motorcycles right.
Speaker 3:Yep, that's legit. So he's got like a what a 600? What is a cbr? Yep, that's legit. I mean there's something freeing about riding a bike. I mean, there, really, it really is. Yeah, it's just. You're probably a better rider than me. How long you've been riding?
Speaker 3:I've been riding since like eight, nine, okay, okay, you started on dirt bikes, dang. I mean you can get hurt doing that, though too. One fall, I mean that could be. I mean I've seen normal people get that could be the serious injuries. So. But your mom was comfortable with just allowing you to do that because she was. She wanted to make sure you didn't miss out on certain life activities, or how did the? How did that process go?
Speaker 4:it was kind of rough at the beginning. She did not want me having any sort of motorcycle. I started off with a little 212 mini bike, moved up to a dirt bike and then slowly started getting the sport bike that's awesome.
Speaker 3:I think there's something to be said about that. What he just what? What Ryan just said there too, is like taking baby steps and kind of working your way up. Like, even for me, like people will see me like what I do in the gym and I have somebody to make a comment at the conference today being like, oh, I can't do what you do, I can't lift that heavy of weight Well, to me that's not heavy anymore. Yeah, if you're just starting and you're going to pick my weight, you're probably going to get a bleed and it's probably not going to work for you and you're going to get injured. But it's like you have to realize I need to take baby steps and get to a certain level, to where you're sufficient at performing, whatever that is, whether it's riding a motorcycle, working out, playing sports. Like, take baby steps. I don't like.
Speaker 3:I'm just a person who likes to to push my limits, though you know to, but I believe that it has to be done in a certain way. You know you have to be smart about it whenever you're doing it. So, yeah, so, whatever it is, if you think you have a limiting belief, you know, I challenge everyone to to push their limits, but to do it in a smart way. To me, the smart way is learning from people that have already been there, and you know, luckily, and your guys is. You know time there's a lot of people doing amazing things. You got mountain climbers. I met a guy that's an MMA fighter. We got bodybuilders. You know we've got baseball players. They're out there now. So find a mentor, reach out to them, dm them on Instagram and start asking them those things, those mistakes that they might have went through, so that you can avoid those.
Speaker 3:Let's talk about medication a little bit. I think it's an interesting topic and I get a lot of messages from moms on Instagram about you know, what do I use. You know, maybe a new medication came out and they're scared to make that jump, and there's just a lot of. There's a big thought process that goes behind. You know switching to something new. I personally have been on five or six different medications. What about you guys? How has the medication process worked for you as far as what you first went on and then, all of a sudden, hearing about new medical advancements and making a decision to try something different?
Speaker 4:So, yeah, I started out on a factor or a medicine called Benefix. That was a every three day injection either in your arm or a port. At that time I still had a port and as time went on my body started going through it too rapidly and I'd have a bunch of breakthrough bleeds, a bunch of bruises, a bunch of stuff that wasn't really working. Then we jumped over to a Prolex. That worked for the first two years and then again my body got to the point where it was just taking it too fast, got a bunch of breakthrough bleeds on that and a little bit after that I jumped on to Idelvian. It's every seven day or every 14 day and that has worked good. For the last four years I haven't had any breakthrough bleeds. Nice, and with the new medication I'm not too keen on it right now because it's still in a trial. Which one are you talking about?
Speaker 3:epipen style oh the the q fitlia. Yeah, I thought it was out already isn't it out? It's still on trial because I had a booth, but it's still on trial. Is it yeah, okay, on trial so I thought we had a guest speaker too at the launch. Okay, so that's probably that makes sense.
Speaker 4:Okay, so it's in trial but it's just, I don't trust it because I don't know what the outcome can be. I'm like, let's just say, 10 years down the road, something happens and it's not working anymore. It's not doing what it's supposed to be and you're getting a bunch of breakthrough bleeds on it and you need to infuse. At that point, I would just rather infuse every 7 or 14 days instead of having something that isn't guaranteed to work.
Speaker 3:Yeah, yeah, and I, from what I understand the cufitlia, it's a prophylaxis treatment, so it's not meant for the actual bleeds, like when you get a bleed, it's just to, like, prevent it. So I don't know, what do you think about it? Would you try something new? So let me let me start before Daniel answers. Let me just say preface this with we've talked a little bit and Daniel does have a anxiety of needles and he's been struggling with through that, trying to work through that process. Definitely want to pick his brain on that, because I'm sure there's a lot of people out there that are watching, watching or listening to this that also have that anxiety. So is that kind of like? What you're worried about right now is like just a different style of injection.
Speaker 2:Yeah, um, different style. Um they're. They really try to get you with the oh, you're not going to be able to see the needle and to me that still just doesn't, you know, fix the issue that it's still a needle going through, and but I might try it. Um, my mom most likely wants me to try it, depending on more information that I get, more. Um might end up coming on this um new medication, so, but if I don't, I probably would still be on the prophylaxis, on a prolix. Okay, so, which is a right now? Currently it's a every once a week dose when I'm in school and college, but when I'm out of college it's every two weeks dose that we do.
Speaker 4:Yeah, so Nice. Well, Elliot, can we get your input on the?
Speaker 3:subcube yeah, I mean I'm actually really excited about the subcube. I've I've become very used to needles in my life. Whenever I was a kid though that was a different story I was actually strapped to a bed every single time I had an infusion. The doc, the nurses, would come in and literally I'd lay in a bed. They would strap my arms, strap my legs and I would scream and kick and I just hated it. I would scream bloody murder. And like back when I was growing up since I'm such an old man, I had to go to the hospital every time, so they weren't actually delivering it to our homes yet, I would just go there every time and it was just.
Speaker 3:I have so much PTSD from just having to always go to the hospital and deal with that. But I grew up and I you know Ryan mentioned you know sometimes you have to face your fears. We were trying to figure out ways to help Daniel with overcoming his fear of needles and I can't really pinpoint how I face my fear. I would say that camp was a big thing for me as far as learning to self-infuse and watching all my peers do it. So I think that is a good environment and set up to where it makes you feel like man. If everyone else can do it, then so can I. I know both you guys talked about being at different camps. Have you ever had an infusion day at camp and that still just not help you?
Speaker 2:Yeah, at camp infusions days they have it. They tried, they really tried to push me to try to self-infuse myself at camp, but it just never worked. But also just seeing all the other campers doing it and what sucked even more was seeing my brother doing it that really hit me like damn, Especially since my brother is younger than me. So it's like how it really hit me in my mind. My younger brother is doing it me. So it's like how it really like hit me in my mind like my younger brother is doing it. Why can't I yeah, I started talking to myself like you shouldn't really try to. You know, do it yeah.
Speaker 3:Yeah, I mean, I get it. I guess there could be some like shame with that, you know, especially if you're younger, brother is doing it and you're, like you said, you're seeing all your blood brothers do it as well. Man, I can't. I was trying to think of a good way. I mean, if you guys can think of a good way, maybe comment on, you know, in the podcast, a way to, like you know, overcome fears. Maybe you've experienced having the fear of needles.
Speaker 3:The only thing that I can personally think of is just like understanding, like the big picture of, like why you're going through what you're going through, like except like fully accepting, like hey, these are the cards that I was dealt and if I want to become the best version of myself, I have to do this, and not just for you, but a lot of like for me. What helped me expand my life was doing things for other people. Like I got to a point where I didn't want to live anymore because I was so depressed and just hated my life. I hated the cards that I was dealt and I didn't accept that as my reality. And but hemophilia is really good at knocking you back down on your ass. I mean I'm like no, this is your reality, this is what you have to deal with. But I asked myself one day if I could, if I could start living for other people, you know, would it be worth living for? And that's when I completely changed my life.
Speaker 3:I was a skinny kid who was look like shit and then I was like, okay, well, who, how do I want to look, how do I want to act? How, what ways can I inspire people? What skills do I need to learn to be that Like? I had to have a vision for what that future looked like. And once you kind of put that plan into place, you know you can and you can start to see it and you tell yourself every day like you wake up and you're like this is who I'm going to be, this is who I am, this is my future, this is my destiny. That's taking back control over your life.
Speaker 3:And I think that if you can just have a purpose, I think, understanding why you're doing things, you know that it's not just for you, it's for the greater good, it's so you can inspire other people in your life, and that you know you're going to, you're going to be successful. You're going to, you can be the successful scouting agent in this business and one day there's going to be kids looking at you wanting to know how you overcame it and why you overcame it. You can tell them you know why you did that and what your inspiration was. So just maybe taking yourself out of the equation a little, maybe for you guys, I can do it and that's what helped me get my life back on track. So something to think about, food for thought.
Speaker 2:Definitely something to think about, yeah.
Speaker 3:So on this next segment, I'm calling it the Bleed Battle Royale. I got these two gentlemen here. We're going to talk about our worst bleed that we've ever had. Kind of see who's had the worst one, see who the winner is. I'm the judge, I'm the judge, so we'll see. I'm older. I'm older, though, so I got the advantage, so you guys are in.
Speaker 2:Or should we also have like yeah, you guys vote too.
Speaker 3:Write in the comments you know on Instagram or Spotify or Apple, wherever YouTube. Write in the comments on who you think has endured the worst bleed ever. Mine still haunts me. Mine's a long time ago. It's not even as an adult, but mine haunts me. So start with Ryan.
Speaker 4:So a little over a year ago I had a bicep bleed in my right arm that made it to the point where I could not move my arm at all. It took two to two and a half weeks to fully heal and I still don't have full motion in my right arm. That one bleed did it? Yep your turn how?
Speaker 3:so like, how'd that happen though? Yeah, like did it. I mean, were you throwing a frisbee? Were you, what happened? Working?
Speaker 4:out. How did that happen? I was in the gym with some of my buddies. We were were coming off from playing basketball and we were running, lifting weights, doing all sorts of that stuff and I felt like a pull in my arm. And when I did that I dropped the weight directly on my bicep and went home thought nothing of it. And next day I wake up my arm is like bright purple and that's when I figured out I had a bicep bleed. That's what's pretty painful. Yes, yeah, uh, limited motion, constant pain. Have you?
Speaker 4:ever taken anything for pain hardcore stuff, like the most I've taken is I don't know, that's it.
Speaker 3:I'm not big in the pain man baby tunnel or adult type tunnel, the one that was kids, a little baby right here, but you give me the little gummies and stuff. I'll choose. If you feel I'm just kidding. All right, we already know he lost. All right, let's go. Damn, I'm kidding, I'm kidding. Damn I'm kidding.
Speaker 2:All right, dan, what you got. Well, I mean, it's probably different from what I was younger, because I still wanted to try sports. You know, figure it out. We were a game and East Shore in like Wisconsin, for one of the recs, and I was coming up to play and this kid is like throwing maybe 80 miles per hour and I'm just standing up there, I'm just like ready to hit, yeah, hit, and he throws one, it's a strike. He throws another one, it's a ball, and then the next one comes in, going with me right in my thigh, and that that was just bad.
Speaker 2:Would you know immediately like, oh shit, this is bad. Yeah, I kind of knew that it was bad. I walked to the dugout and my mom was there. She was like like freaking out, because it's kind of what my mother does when the kid gets hurt, and that's like when I knew like okay, that's done with sports, and it just got bad, it was probably from here to like way so and I think it lasted maybe two weeks you didn't have to go to the hospital or anything, though, just infusing.
Speaker 3:Yeah, just infuse. Okay, cool, see, like mine, mine's, mine's a winner already before I'm tight only because, listen, I lived in the ancient times where we didn't we had to go to the hospital. So I was actually like I think I was 10 years old and there was a bee. I was outside with my, my brothers and some of my friends and there was a bee that was going around. I was just scared, shitless, of bees and I was like and all of a sudden I saw it like coming right at my face and I I just like jumped back and I fell on my tailbone and it like swelled up so quick and I could not move. I was just stuck. I'm like I cannot move at all.
Speaker 3:My mom gets me in the house and I'm in excruciating pain, just screaming, and I was just like. I knew it was bad, but I was like please, whatever you do, do not call the ambulance. Like I'm just a kid, but I knew I have the severity of it. I was like please, just promise me you won't do it. She's like I'm not going to do it, I'm not going to do it, I'm laying in bed and she goes another room right away, calls 911.
Speaker 3:And all of a sudden I hear the ambulance come in and, dude, I was just panicking, man, and they, they put me in the back there and they ended up having to do. I don't even know why, they gave me a spinal tap, but they stick this huge needle. Like oh, stick this huge needle. Like oh my gosh, it was just the most traumatic experience for me as a kid and just being like I can't walk, like what the what the heck? I cannot walk at all. Like it was just such a weird thing and like when you're at for me. At that age I didn't even fully comprehend a bleeding disorder, hemophilia. I knew I was different, but it was just like I didn't know the severity of it. So that's my story. Yeah, that's my story yeah, yours definitely wins.
Speaker 3:Yeah, see, you guys got some growing up to do. Man, I was seeing I was hardcore, I'm sorry. In the ancient times I know exactly I've had a. You guys were like I just went home in a few. What are you talking about?
Speaker 2:I mean I had a metal pan like on top of like my fridge.
Speaker 3:I've opened like the door, yeah, and the thing just dropped on my head, dang, yeah, yeah I mean there's we probably have a lot of stories honestly like that we could talk about, but yours definitely takes the cake. Yeah, it was just all different times, different times, but on that note, I just I'm actually happy for that because as we age, we look back at the new generation and we want you guys to be healthier, living more fulfilling lives, the best versions of themselves.
Speaker 3:Yeah, exactly. So it's actually a proud thing. It comes from the top. I mean, it happened for us. We had guys that were in the bad blood era, who got hepatitis C, hiv, people that they were dying, but they were fighting. They were fighting for our message, fighting, fighting for, you know, resources for us to live a better life. So it just keeps on trickling and I'm sure you guys will keep on doing it. Uh, yeah, by the time you guys get my age, you'll be flying cars and shit, like you know.
Speaker 3:Flying cars wait, I mean the rate we're going right now with technology. I mean, yeah, I'm saying dude, I saw this thing on this ai. Well, no, it wasn't ai, some new technology, it was like a, it was like a cougar, like a robot cougar. This person was like on top of it and like the thing, like with like you'd ride almost like a motorcycle, but it would like jump like and like, go on to like hills and shit like, and it's got like flex. It looked like a insane, absolutely insane. Yeah, we're going crazy places with technology.
Speaker 3:Oh, yeah, speaking about the future of hemophilia, I think this is where we're going to end our episode the future of hemophilia. What do you guys think we need as a community right now, like what are there any resources that you guys can like think about? I think like things that we don't have access to now on. Maybe if we had this then we could, you know, live a better life. Or how do you guys feel about that right now at your age? I know it's a little bit different at your age, but do we need more resources? Or like, where do you see the future of hemophilia going?
Speaker 4:I see the future of hemophilia going uphill from here. We are role models for our younger generation and with the younger generation coming in, they're going to look up to us and want to kind of be like us, want to be able to self-infuse, want to be able to deal with bleeds themselves, want to be able to do what we do and as time goes on on, they're going to get there and when their generation has another generation coming in, it's going to be the same process yeah, I think that's what makes our community so unique, like the fact that you're thinking like this at your age.
Speaker 3:You know like taking the responsibility for the next generation is wild. I can't think of any other disorder or diagnosis where you've got people like such a tight-knit community of people. Everyone just like has this. Like you when you have generation as well. I can't think of any other disorder or diagnosis where you've got people like such a tight knit community of people. Everyone just like has this. Like you, when you have hemophilia, you just have this sense of like purpose where it's like I've got to do something, not just for me but for a greater cause.
Speaker 3:I think that's what makes us so special as a unit. And, like you said, with you know future generations like we're just going to keep on having better and better leadership. Like, when I think about like what we might need, I think about the mentorship aspect. Like I wish there was. Like you know, like like the big brother, big sister programs where, like kids that don't have parents, like they, you can like register to be like a mentor to like these children. I think that'd be cool to like have like a blood brother mentorship thing where you get assigned somebody who's already established and proven and they've gone through some stuff, that you just stay connected with that person and let them kind of guide you through the journey. I think that would be a beneficial resource.
Speaker 2:Yeah, what I see with the future of you know, you can feel you as a community, obviously one the medication is going to be so much better.
Speaker 2:I mean, with what you said, like how technology is getting so much, so much better, we're going to be able to find more ways to help people, help us with the bleeds, and I mean, right now, we're barely, you know, getting, yes, we took a big step from you know, the medication, but there's going to be one more bigger step that is probably going to be coming maybe in the next 10 years or so, and also, I think, as a resource, that having more of a more kid-like social media page or something where we can meet people from all around the world and I mean that's what the conventions are due for, but like within social media. So, yeah, we can stay connected with them through there, because you know, yeah, we might be able to see them at the conference, but you know, sometimes you're never able to, yeah, you know, get into contact yeah, I feel like there's been efforts out there to create platforms like a social media platform for just hemophiliacs.
Speaker 3:I think there was something called my hemophilia team and that was an effort before. But I feel like it is really difficult to create a new social media platform where people will actually use it. So, but maybe there, maybe there could be more thought behind that. Don't know how to do it better, you know, so that we can stay connected and maybe like have like a group for people who love to play video games you know they all talk about video games, you know, maybe like have different groups based upon your interests and stay connected that way and then when you go through hard times, I mean, I think I think your idea is great. You know you go through hard times or whatever, and you just like you want to talk to somebody where you don't have to say much, like they just already understand. You don't have to explain everything to them, they just get you. I think that's an awesome idea for sure. I think we need to.
Speaker 3:I think, as in the hemophilia community, we need to do a better job utilizing social media to reach people and to make some change there. I see a lot of companies catching on, but I don't see anyone really doing exceptionally well with it. And that's what I'm trying to do with the podcast and my platform as well. And I've reached a lot of people I mean my accounts up to a thousand people already, and majority of them are in the hemophilia community, and I use a lot of special hashtags and I can't tell you how many messages I get of people saying oh, I found you through the hemophilia hashtag, hemophiliac, you know, bleeding disorder hashtag, whatever. Like you know, they get noticed that way, but it's going to take a lot more than one person's effort, you know so I.
Speaker 3:And at the same time, you know, with all this you know work that we're trying to do, you still have to live a normal life, you know so you can't just give your entire life to my. You know my entire life is just hemophilia. You know we want to feel normal too, so there is a balance there, but I think that as hemophiliacs, especially these two guys probably not everyone, but, you know, guys like this they're wanting to lead the charge and they're taking responsibility and accountability for being the leaders of the of this next wave of people coming in, actually want to finish up on one last thing, um, and then I'll kind of let I mean, I'll let you guys talk and see if there's anything else, like any final message, that you guys want to give.
Speaker 4:But what is one thing that you wish you would have known sooner? As a hemophiliac, I wish I would have known that you aren't really limited to what you can do. It's just how people perceive your bleeding disorder. Nice, what about?
Speaker 2:you, daniel, again. Um, I think something that I would have liked to know is that to um know that the needle is always gonna be there and to never really think about it and try to um shift my mind to something else.
Speaker 3:Yeah, you know yeah, yeah, it seems like the needle is a big fear for you. Yeah, but, dude, like, even even though I don't have a fear of the needle, I still don't enjoy it, and I can't tell you how many times. Like I I'm, I'm trying to be a leader in the community and I still miss my doses, you know, at times, because I'm just like fed up, I just don't want to do it. I'm hurt, but I just don't want to do it. So I think that's just. I think it the part of the process of being great. Anything is failing. But you have to be intentional about thinking about, you know, those thoughts like why did I fail? Like why do I need to do better, like I need to do better for me, I need to do better for my family, for everyone, and then just get back on top of it. You know you mess up a couple times. Who cares? Just get back up. And it's always about getting back up after you fall down.
Speaker 4:Just never give up. There's always light at the end of the tunnel.
Speaker 3:Exactly. I love that man Because I know some of you guys are just seeing the darkness, but you're hearing it from us there's always a light at the end of the tunnel, just one foot in front of the other. Sometimes you need to ask for help. That's one of the things that for me. What I wish I would have known sooner is that you need to. It's okay to ask for help. A lot of us isolate ourselves when we're feeling those dark times but we need each other, this world. God didn't create us to be alone. He created us to socialize and to use each other for strength and using God as strength. I'm a Christian man. Using God has been a huge outlet for me to um getting back up on my feet. So you're not alone.
Speaker 2:Keep on fighting, I think that, um, just with, uh, learn as you go. I think that's pretty much with everything I mean, but with hemophilia it's always gonna be there. So just we kind of talked about that.
Speaker 3:Yeah, like these are the cards you were dealt. Yeah, you gotta play them, man, it's gonna, it's not gonna go away, and like I don't know about you guys, but there's been times where I was I pretended like I never had hemophilia, I just lived my life like yeah, I mean so exactly what you just said.
Speaker 2:I've like felt and completely lied about. You can feel it. Or I like I know now that it was really bad of what I did when I was younger is, um, that I try to hit my bruises because I just didn't want to get like my dose or and show that like I'm don't have to feel to be and, yeah, I want to be like a normal kid, but I wasn't a normal kid. I had an inferior beat and I learned from that. Hiding the bruisings wasn't great.
Speaker 3:Yeah, I've hid from mine for so long. But I guarantee everyone that's a losing battle that you won't win. You can only hide for so long, but you can't beat that. But even though you can't beat it, you can actually leverage it, to be honest. So you might not beat it itself, but you can't beat that. But even though you can't beat it, you can actually leverage it, to be honest. So you might not beat it itself, but you can use those experiences you're going through to empower you, create a higher level of character inside of yourself and make you stronger than anybody else who's not suffering from anything. So you can actually use that to your advantage, if you just find the opportunity and the adversity that you're going through. All right, guys, what do you think? That's pretty good Hemolife.
Speaker 1:After Dark. That's a wrap. Thank you for tuning in to the Hemolife Podcast. Today's episode hopefully inspired you and provided valuable insights to enhance your journey. Join us again to hear more incredible stories and expert advice from our community. Make sure to subscribe and stay connected with a group of extraordinary achievers and pioneers. On behalf of LA Aguayo and the entire HemoLife team, keep pushing forward, strive for excellence and remember you are the architect of your own destiny. Until next time, stay strong, stay inspired and continue on your path to an elite life.