HemoLife Podcast

You Can Build A Big Life With Hemophilia

• L.A. Aguayo • Season 3 • Episode 7

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We sit down with Johnny Hawkins to talk about surviving a life-threatening brain bleed as a toddler and growing into a confident adult with severe Hemophilia A. We get real about bullying, treatment discipline, staying active, and why your bleeding disorder can shape you without limiting you.
• Johnny’s origin story as the first known case in his family
• A childhood intracranial bleed and craniotomy plus how his dad’s CPR training saved his life
• Parents and friends who treat him as capable not fragile
• Bullying and the emotional cost of looking “fine” one day and injured the next
• Prophylaxis infusions, ports, target joints and learning to feel a bleed coming
• Training and sports with hemophilia plus smart risk taking without “bubble wrap”
• Building a hands-on custom automotive business and rejecting limiting career advice
• New hemophilia treatments, reactions, and what aging with hemophilia changes
• Consistency, mentorship and community as the difference between inspiration and lasting change
Make sure to subscribe and stay connected with a group of extraordinary achievers and pioneers.


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 And Podcast Mission

SPEAKER_00

Welcome to the HemoLight Podcast, your gateway to transformation and empowerment. Hosted by Eliot Wile, 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 food providers. 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_02

My name is Dr. Joe Moleski. We have LA, and we have our special guest, Johnny Hawkins from Orlando, Florida. Welcome to the show. And we're going to talk a lot about uh, you know, hemophilia X, of course, but we really want to talk about Johnny's life and we want to talk about how hemophilia does not define you. So let's get into it. Welcome to the show.

SPEAKER_03

Yeah, welcome, Johnny. Thank you both so much for letting me on here and everything like that. And uh, you know, I I I don't even know where to begin with uh hemophilia. It has its ups and downs, most definitely. You know, uh you have your days that, you know, aren't the greatest, which I'm sure both of you very well. But, you know, you got to look at it at a certain point where you gotta turn those bad days into positives. And I think over the years, you know, I'm 27 years old now. So uh I think over the years, learning how to cope with it, learning, you know, how to take those bad days and make them into good days really changed my mindset on a lot of things. And honestly, that didn't take effect until I was probably in my late teens. Yeah. So that really took effect.

SPEAKER_02

Yeah, so I have severe hemophilia uh A, so factor eight deficiency. What kind of hemophilia do you have? A or B?

SPEAKER_03

I have A. Severe A.

SPEAKER_01

There you go. So what's your origin story with your family? Are you are you the first in your family, or does this run in your knowledge? Yes.

SPEAKER_03

So uh there's been no trace or any sort of hemophilia anywhere down our you know, family tree or anything like that. But as as we know for now, I'm the first one.

SPEAKER_01

So how what how was that like growing up? I know there's like I we were just talking, there's a lot of new mothers out there that have uh newly diagnosed children. And um, you know, how was that like for your parents growing up? What was the information like? You know, were they were your parents scared? Kind of tell us your fat backstory.

SPEAKER_03

Uh yeah. My uh so when my parents first found out, they didn't know what it was. You know, of course, you know, it's the doctor's job to, of course, inform them of all the information, all that stuff. So you could probably assume that two parents were like, oh my god, my child has a bleeding disorder. Like uh we're probably gonna have to take this seriously. A little bit down the road when I was one, I ended up having a uh a uh basically a craniotomy. So I had a blood vessel blow in my brain. And uh I was very, very, very lucky to survive that one. And uh my hemophilia definitely got, I don't know what the right word for it would be, but it definitely got more severe in that case because I became more fragile. My mom and dad, those first like 10 years was uh very rough. I was in the hospital a lot, um, you know, constant checkups and everything like that. But I think definitely they were definitely scared at first. But over time, of course, when you get the hang of it, it loosened up.

SPEAKER_02

Yeah, I mean, we share we share that, Johnny. I mean, we chatted a few weeks ago, and I had an intracranial bleed as well. They came to my parents at the bedside, they're like, if he was an A student, he's probably a C student. And I was like, My parents were freaking out. They're like, oh my God. So I just rem you know, I I can I remember my parents, even to this day, they're they show me pictures of when I was a baby in the you know, ICU and whatnot. And that's scary for mothers, but look at us. We're here, I became a doctor, and uh, we're sitting on a podcast. Hey, we're doing all right.

SPEAKER_03

Actually, uh crazy thing about the situation, the brain bleed situation, is my mom found me, so I was one year old when it happened. She found me in my crib, the left side of my body had completely gone purple, so I lost all circulation to that side of my body. And I actually went into cardiac arrest in our home, and my dad is the one that resuscitated.

SPEAKER_01

Oh wow. Whoa.

SPEAKER_03

So my dad works for a company called Lairdol, which is a they do human simulations, so they basically train doctors, paramedics, first responders, whoever it may be, how to do those scenarios on these basically like robots that go into cardiac arrest. You can draw blood from them, you can do all that stuff. So if my dad did not have that job, dude, you'd be dead, I would not be here right now. That's crazy.

SPEAKER_02

Right there, I'm telling you right now, I know it's Good Friday, but uh I'm telling you right now, that is how God works. He put your dad in that position to save you. You're here today. Dude, that is that give me chills. Oh my god, I didn't know that. We didn't talk about that. Wow.

SPEAKER_03

Yeah, it's uh definitely a thing I can never repay him for, if you guys understand what I'm saying. Like, yeah, yes, something money can't buy, something can buy.

SPEAKER_02

So he was, you know, yeah, and I I remember being a hospital physician, you have to go on these training simulators where you have to compress, you know, it's a it's a it's a dummy. I I know exactly. So the fact that he he was very much trained in that.

SPEAKER_03

And all those dummies and everything, yes, there are many different variations of them and different companies, but majority of those are human simulator dummies. So those are the dummies that his company sells and all that, and he still does that to this day. So yeah, man.

SPEAKER_01

I mean, uh having that happen though, and the beginning stages of you know, you having hemophilia, I'm sure your parents were probably really scared, like as you were growing up, like probably were even more overprotective than than normal, being like, Man, we almost lost our son already to this disorder. So were you kind of were you like coddled in a way, kind of growing up? Like, oh my god, we gotta protect him at all costs, and put a helmet on him, put some knee pads on him.

SPEAKER_03

So, Joe, I don't know if you did anything like this, but I had to wear a blue helmet for 13 years of my life.

SPEAKER_02

Did not have to wear the helmet. No, I had to wear knee pads, elbow pads, did not have to do that.

SPEAKER_03

So my parents were my biggest supporters. They let me do whatever I wanted to, but they just wanted me to be careful. And even when the doctors told me, no, you can't do this, no, you can't do this, they wanted me to live my life, which I think this these days, kids with hemophilics and parents, they get too scared of it. Hemophilia is not something you have to be scared of. Like it's not, it's it's something you need to honestly embrace because you have it, it's not going anywhere. So make it a part of you, like make it a part of your everyday. Like honestly, make it into a hobby, which LA, like you have done. Like you you love working out, you love doing all these things. So you built something that describes you around it. Yeah, yeah. And uh no, my my parents, they were I got very lucky having the parents I have because uh they I mean, yes, they were scared. My mom more scared than my dad because you know, I'm a mama's boy, so yeah, my my mom was always like, Be careful, make sure you're wearing your helmet, make sure you're doing this. But my dad'd be like, You're okay, don't tell your mom about it this time, but you're okay. Yeah, and also it's it's the friends I had growing up too. Oh yeah. My friends' parents, I couldn't have asked for so I I still have my best friends that I had since I was in kindergarten. Wow. And yeah, it's uh three of us. Their parents treated me just like how my parents did. They didn't treat me any differently. They made me feel normal, and they would just say, Hey, make sure you know you're wearing your helmet, make sure you take care of yourself and stuff like that. So I'm very grateful that I was able to be raised around parents that treated me as an equal, not someone as different.

SPEAKER_01

So you were able to wear a helmet for that long of a time and not feel like you were different, that you were an outcast, black sheep, kind of like I feel like that would make me feel like out of place. And I was always that's what my pretended for such a long time I didn't have hemophilia and I didn't tell my friends.

SPEAKER_03

I was uh I was bullied pretty bad.

SPEAKER_02

That's what my next question was. I was bullied, I was bullied um until about ninth grade, every grade.

SPEAKER_03

I mean, I I I was bullied, but I didn't let that stop me. Yeah. It was like I mean, I could tell you stories that would disgust you that kids did. For instance, this one time I found my helmet that I brought to school and I would keep under the teachers, you know, they had these little cubbies and I would keep it in the cubby, and I uh walked into the bathroom one day and I found my helmet in the boys' urinal. Oh man. Oh gosh. So kids thought it was funny, you know. Yeah, they were just like and I looked look looking at it then, I was like, Mom and dad help me fix this, you know, or like to find out who did this. And like, but nowadays I look at it and I'm like, they didn't know any better. They yeah, they were just immature, they were young, and you know, if they had it, they wouldn't be the ones laughing because you know it's never funny to bully anybody. Yeah.

SPEAKER_02

I got bullied because I would come in with like crutches one day, and then the next day I wouldn't have crutches, or I would have a sling, and then the next day like I wouldn't, or two days later, and they were like, You're just fibbing, like you're a liar, and you're I I don't know, I was in and out of school all the time, so like I was bullied experience as well.

SPEAKER_01

Same thing for me, because you one day you're fine, and the next day it's like, what the heck, dude? Like, come on.

Childhood Bullying And Support Systems

SPEAKER_03

So, did you guys have when you guys were young growing up, your target joints? Did you guys consistently get bleeds a lot when you were growing up? Okay, so that's where that's where we differentiate. Sorry, that's a hard word, but I was very lucky. I I I I have I've had a couple of them, but I haven't had enough where it bothered me. The last bad bleed I had was probably in 2017, and it's because I worked out too hard and I got bleeds in both of my knees off of a leg press. Wow.

SPEAKER_02

And you're doing prophylaxis, though. You're doing prophylaxis infusions, so that obviously helps for sure.

SPEAKER_03

Yeah, so my mom actually infused me in my chest from a port for 17 years.

SPEAKER_01

Every well, I mean, that's pretty impressive to not have that many bleeds. I mean, really. So I mean your joints must be okay then if you didn't really experience any bleeds, or am I wrong?

SPEAKER_03

No, I'm a I'm very healthy. I'm very healthy for the severity of what I the hemophilia a severity and everything like that. I'm very healthy. I take very good care of myself. I know when I and I know you guys can probably understand what I'm saying here. You guys can feel a bleed coming on before it even comes on. Like you don't infuse, you just it feels different. There's a different feeling. I don't know how to explain it. And I, you know, I tell my girlfriend that all the time, and I tell people, I'm like, I think I have a bleed coming up. Yeah. They're like, you don't see anything, but I can just feel it.

SPEAKER_01

It's like we hit like we're in tune with our trough levels. It's like as soon as our medicines like being metabolized and gets to a certain like level, we're like, I feel more susceptible to getting a bleed at this moment.

SPEAKER_02

Yeah, to to piggyback on that, I have a question for you because you haven't had that many bleeds. Do you feel that way like psychologically? Like I do my shot and I'm planning on doing a big lifting day in the gym or this and that. Hey, I'm gonna infuse and I'm gonna go to the gym, versus like, hey, it's been three days since I last infused. I gotta be a little bit more careful because I don't have factor in me. Like, I feel like for for me, it's at least like I infuse three or four times a week because I'm very active and I don't want to get a bleed. I'm wondering if do you still have do you do you have that or and you're kind of cautious based on the time you infuse?

SPEAKER_03

So my knees are probably my biggest target joint. And of course, leg day, or if you're working out your legs, certain exercises can put a lot of strain on your knees. I usually like to infuse either before or after I do legs. Or if it's a light leg workout, you know, I'll see how it goes. But usually uh I'm pretty good with it, but anything, you know, you know, below above the belt, I'm pretty okay with not infusing before like that.

SPEAKER_01

I think that's really good information for parents for sure. So I mean, I think one thing that Johnny exemplified was discipline and being compliant to his regimen. And you can see the way he looks, you know, he's he's talking about being healthy and not having that many bleeds. And then you look at the other side of that spectrum, myself, I never infused. I I hated infusing. I didn't I didn't have parents there who were like on top of that 24-7. And they kind of get like put it in my hands, and honestly, I would just lie and just say, Hey, I'm I'm good, I'm I'm chill, and I knew I would have a bleed. But when I was that young, I had no idea what I was doing. And now as I'm older, you know, I've suffered so much in adulthood because of yeah, chronic pain into my joints. Compliance is huge. And I think you know, it's easy when your parents are are there doing it for you, but then when you start getting into young adulthood or even adulthood on your own, like you have to take it serious.

SPEAKER_02

Yeah, for sure. I mean, it's just interesting where I'm 38, gonna be 39, LA, you're 38, right? Or close to it. Nine. And then you have this you're 27, correct? So that 10-year gap, I feel like in that 10-year gap, at least when we were in the early 90s, prophylaxis was not a treatment. I just remember that actually. I just thought of that.

SPEAKER_01

So we went we did we didn't practice that at all.

SPEAKER_02

No, it was on demand. So we had 10 years of joint damage, we had 10 years of joint damage. And so, yeah, that's why it's something reminded. Yeah, yeah. Yeah. So it's interesting how like that was the sh the the Yeah.

SPEAKER_01

Yeah, I remember what's crazy. I I don't know if you guys have experienced this at all. When I was younger, my bleeds used to be a lot worse. So if I twisted my ankle, my ankle would swell up and it would get so huge that I would I wouldn't be able to even put shoes on. So I missed a ton of school because I couldn't do that. But what's really weird now as an adult, even my worst bleed ever, it I never have that reaction anymore. My body doesn't do that anymore. Is that like that for you guys at all? Like, do you guys like when you have a bleed, does it get like extremely huge and like swelled up?

SPEAKER_03

Not particularly, you know, the only place that really swells up for me is gonna be my like my thumbs. So like right here. Yeah, yeah, yeah.

SPEAKER_01

Do you get that from bench pressing and stuff? Like because like the bar being inside of and eyes padding.

SPEAKER_03

I work on cars, I own a custom automotive business. Wow. So, you know, holding a lot of wrenches, smacking around things. So I get bleeds by iron right there. Yeah, I get bleeds there a lot.

SPEAKER_02

And let's talk about you played a lot of baseball, so like any injuries in baseball, and tell us a little about that. I mean, that's really interesting.

Prophylaxis Discipline And Staying Active

SPEAKER_03

Dude, I've been hit in the face with baseballs. I mean like line dry baseballs, like ones that should knock you out and give you concussions. I've I had my middle finger one time, you know, swinging for a ball inside pitch. It actually hit my finger so hard, my middle finger was the same height as my pinky finger. Damn. Oh my gosh. Into the socket. And then it completely ripped my nail up and everything. Yeah, and I just went to the emergency room. I infused a munch and they put it back in place. I didn't break anything. No, I've gotten very lucky. But I played I played baseball for eight 17 years. So 17 years I played baseball and then I started my own company, so I kind of just drifted a little bit away from it. Nice. You know, you get to a certain point where, you know, you got to choose, am I gonna continue to keep doing this or am I gonna go another route? And, you know, I wanted to go that other route. I wanted to do something new. But, you know, big thing I have to say for you know, kids out there that are playing sports with hemophilia and all that stuff is limit yourself, but don't limit yourself too much because you want to still have fun. And you're not going to have fun if you limit yourself too much. And it's good to take risks, it's good to get out there, you know, even for someone without hemophilia. You know, this could be go for anybody. Like I agree, that's awesome. That's really good information. You can't just, and I've always loved to talk about this, and you know, I've talked about this with my parents so many times is don't wrap your kids in bubble wrap, let them get bruises, let them get scratches, let them get tough. Yeah.

SPEAKER_01

That's hard though, man. You don't have kids, right? Not kids. But I can imagine that being so hard. It's so easy for us to say that. But like I have a dog, you know, we both have new babies. But it's like if I if my daughter had or my son had hemophilia, it would be hard to see them be in pain and be like, go ahead, you know, go ahead and take that risk. But but you're totally right though, as hemophiliacs ourselves, we need to be able to have that opportunity to take that risk and fail on our own and learners. Yeah, I feel like it it makes you who you are.

SPEAKER_02

Like, I don't know, like I learned so much.

SPEAKER_03

But like you said something earlier, LA. You said you asked us a question, and you asked, um, does your joint whenever you get a bleed in your joint, does it swell? But nowadays your joint doesn't do that. Yeah, because your body has adapted to it, your body has understood it, your body has overcome that. And going back to wrapping your kid in bubble wrap, wrap your kid in bubble wrap, they're gonna want to stay in bubble wrap their entire life. And they're gonna be scared, and they're not gonna want to enable them. Like that is true. What happens when your kid gets to be, you know, 18? And you know, when we get 18, we're very adventurous, we want to go do everything, we want to go here. You need to let them be able to make their own choices too. Yeah, yeah.

SPEAKER_02

100%, man. 100%, because then also that leads into other aspects of their life. They're gonna be sh like, oh, I can't do this, I can't do this, you know, and it just keeps limiting that limiting beliefs, like it creates a belief system in your head where you just don't think that you're capable of doing more. Yeah, and you are, you know, you you just mentioned you have your own business, I have my own business, LA has his own business. Like, you know, if you bubble wrap that person, you're really squandering or essentially making that person not as adventurous and maybe not as successful, I would say, maybe in life.

SPEAKER_03

Yeah. And I'll also be completely honest here. My craniotomy caused me to have a lot of learning problems. I struggled greatly in school. Yeah. I had tutors my entire life. I, you know, math, let's not, we're just gonna say math is not my strong strong suit at all. I'm there with you. But over time, I'm good with numbers. Like, you know, at my business and everything, I have to be good with numbers and all that stuff. And over time, your body just like gets used to it, like it just adapts to it.

SPEAKER_02

Yeah, I just think it's great that you're you're doing something laborious, like, you know. I mean, I don't know, I've always always told, hey, you're hemophiliac, you gotta get a desk job, you can't do anything hard and tough. Like, you're like, no, like you can do what you're doing. Tell us a little about that.

SPEAKER_03

No, dude, I uh I beat the snot out of myself on a daily basis. Like, I really do. I I push myself hard. I've been doing this since 2020. I started in my parents' garage and uh got to the point where they were like, okay, you need to get out. So I got my own shop and I've been there ever since. It's uh not the biggest place on the planet, it's about 3,000 square feet. But I have two people that work for me, and we're not the biggest company, but we do we do pretty well. And we work some root with really big names in the industry. So I say we're uh going pretty well right now, at least. So it's awesome. And it's custom auto body kind of like okay. So I when I whenever I explain it to people, uh the easiest way of saying is I'm a mechanic, but I'm not a mechanic. I I'm more of like an automotive boutique, if you think about it. Because I'll very uh like uh detail-oriented stuff. So have you guys ever seen the starlight headliners?

SPEAKER_01

Like literally, like I was literally getting ready to say that. So I was gonna that was gonna be my example. So like like jobs like that. Yeah, boutique. That's what I that's the first thing that I started thinking about. It was like really like spiffing up the vehicle, making it look that's exactly how I started my company off of those headliners. Oh, you serious? No way. That's cool. Those are badass. You need that, Joe. You need some starlights, man. I know on that truck, what truck you got? That truck is beautiful.

SPEAKER_02

Dude, we need to get the unheard rap on that. That matches like the camo thing.

SPEAKER_03

You have a tundra? Dude, it's beautiful.

SPEAKER_02

Yeah, I have a 1794 uh Toyota Tundra. Interesting enough, it's in Army Green. So if you just even chat GBT at Arn the Army Green with the TRD Pro package and the like brown seats and brown leather, that combo, it's very rare. Yeah, I love the so there's they made anywhere between 600 to 1,000 of them.

SPEAKER_03

Yeah, so that's a common vehicle you got there.

SPEAKER_02

No, and like it's cool because like it was made in Texas, and in the like right here, the center the council here, there's actually a box where you can put a pistol, like it's got a lock, and in the back, it's got um a rifle rack in in like underneath the seats. That's actually yeah, it's pretty rare to see that in a car. I love trucks.

SPEAKER_03

Well, I have one of my own. Uh Tundra? No, uh, I have my my own truck, but it's uh it it's not your average truck. Okay, what is it? It's a 21 F two fifty platinum. Okay, but it is uh it's kind of hard to explain it to you. Guys, I could stand under the neath the mirror. There's nothing inches above my head.

SPEAKER_02

Oh, it's a big boy.

SPEAKER_03

Uh it's an orbit.

SPEAKER_02

What kind of tires? How big are the tires?

SPEAKER_03

Uh I have 40s on there and 28 by 17 inch wheels on there. Yeah. It's a big grass. It's a big big, big, big grill.

SPEAKER_05

I actually have a picture of it right here. Yeah.

SPEAKER_02

Oh my gosh, that thing's huge.

SPEAKER_01

That's really cool though.

SPEAKER_02

Wow, dude. It almost looks like it has a ghoulies on the back, but no, those are those are huge wheels.

SPEAKER_01

Holy shit. So is that like a show truck?

SPEAKER_03

Like you take it places and like so that's what I basically do. I build vehicles like that. So we just finished one up actually uh about two weeks ago. Yeah, coming in here soon. That's awesome.

SPEAKER_01

You know, TikTok all a lot of uh videos on people like I don't know what company is doing it, but they're like building old school Broncos and like really like stiffing them up. Those are so badass, dude. They're like$300,000.

SPEAKER_03

Yeah, it's a little out of my price range.

SPEAKER_02

So let me ask you this. This is a thing when I was in uh Florida a couple weeks ago, there's trucks like that, but they're like angled like this. Stop. Like, is that is that like a big is that a like what is that? I mean, I probably saw 20 of them, and they're just like they're like we were we were indestined. Okay.

SPEAKER_03

I mean Yeah, so we called those squatters.

SPEAKER_02

Squatters. I mean, it was wild.

SPEAKER_03

Yeah, we don't we don't we don't like those. Who we work with, no. I will not, I literally I will refuse them coming to my shop. Yeah. Gotcha. That's fine.

SPEAKER_02

Well, I tell you what, it'd be cool to come down to your shop and see you know what you do and all that. I think we should uh maybe try to. I mean, we do these events all the time. We're gonna do one in Chicago. We should probably maybe do an event in Florida. I mean, Florida's always a nice place to travel. The last event we did in Texas was a workout event where we taught hemophiliax how to work out and all this. We're gonna be doing a couple other events throughout the year, but you know, it'd be kind of cool, like, I don't know, to maybe see what you know your shop has to offer and all that and just show hemophiliax another side, like, hey, you can do stuff like this. You know, like you said, you beat up your body, like, hey, yeah, you can do stuff like this. You can, you know, think outside the box and look what you're doing. I mean, look what LA's doing. He's got a clothing company. I'm a physician. What I'm trying to say is we don't let hemophilia or anything define us. I think it's pretty awesome.

Sports Work And Not Bubble Wrapping

SPEAKER_03

You shouldn't. Yeah. You should never let it. You should always just you gotta live the way you want to live. And uh I know you guys said you wanted to also maybe maybe talk to the parents in this podcast to try to set an example. Um and you know, I'm not a parent, so I don't know how it is to I don't know the feeling of having a child yet. I don't know something, like something, and I'm sure it's out of this world. I'm sure it's something that you words cannot describe and feelings cannot describe. But from a hemophilic, and I'm sure these two guys here can also agree with me, is the most important thing of being a hemophilic is to take care of yourself. Do not have corners, do not, do not, and we all do it, but in the early stages, don't forget to infuse. Infuse on time, yeah, a fuse when it's appropriate, infuse when you need to, as needed, and if you have a lead, infuse a little more. Now, getting older and everything, you get busier, and you tend your mind tends to float off. And me, I'm two days past my infusion right now. I was supposed to infuse today, but the most thing more the just the moral of the story, most important thing is just take care of yourself because in the long run, you're gonna love yourself. That's just take care of yourself. And if you didn't take care of yourself in the beginning, start taking care of yourself now. Yeah, totally especially and for the kids that don't have parents to push themselves or push them. I love that. It's it's if you're if you're peripheral infusing, it's only 20 minutes. It's if that, it's only 10 minutes if that of your day. And then you can put it away and be on with your day.

SPEAKER_02

Just get on with yeah, be on get on with your life. Hey, I gotta do this done. Let's go do this. Like, I just wanted to get it done and be, yeah. And I know LA, you know, you infuse a lot, I infuse a lot. I mean, we just hey, get it done, just keep moving. Yeah.

SPEAKER_01

I mean, I wish I could say that I was extremely compliant. But like Johnny was saying, I you know, being so busy, you know, having a new child, running a business, trying to go to the gym, stay fit, you know, just I'm always catching myself being behind as well. I mean, it's not easy. So I mean, you know, I think it's okay to let people know too, hey, we we all mess up, we all miss. Like it's not easy, but you do need to get back on track, you know. Like that's the important thing is like we can fail, we can mess up, but we have to be able to get back on the horse and just keep it.

SPEAKER_02

And I think, you know, we talked about this in a previous podcast, LA, but like, and I and me and Johnny talked about this too, but like there's a lot of new medications out there. There's a lot of, you know, we even had uh Maya on a nurse practitioner and talked about all the medications. And I think for we can call us the old goats. I'm you know, we're on factor, you know, it works. I don't know, some of these new medications, you just I think giving it some more time to just see like what comes out, you know, before, you know, at least personally, yeah, near LA try it. It's it's interesting. There's gonna be new medications, but like I'm not the type of guy to be like, just came out, let's go.

SPEAKER_01

Like I feel like most new parents though, I feel like most new parents are gonna go right to those new medications. I mean, I don't know. I mean, if you're I mean, would you rather stick a needle on a baby like that like intravenously or subcutaneously? So I mean it's yeah, it's gonna be the way. Just see how the landscape is. What are you thinking, Johnny? I see Johnny thinking.

SPEAKER_03

So yes, when you put it that way, yes, like with a baby, you know, do you wanna is it something we can trust yet? Yeah, but that's the thing. But like I'm a big, big, big believer on if it ain't broke, don't fix it. And I know we spoke about this already. Yeah, because we were both on coginate. Now you're on something else and I'm on Chivi. Yeah, but it's a it's the same factor pretty much. Coginate makes or yeah, how Chivi makes coginate, whatever way it went. But um, no, I just I went with uh oh my gosh, what was it? A loctate. Yeah, you know, yeah, and tried a loctate because they were like, oh, it's the new best thing on the face of the planet, and you're gonna get a higher uh level out of it, and your trough is gonna stay higher for another day or so. But my body eats through my medicine. Yeah, like I'll be at right when after I infuse I am so high that literally six, twelve, eight hours later, I'm already half. Yeah, yeah.

SPEAKER_02

Mine, I have a seven hour uh seven hour half life. That's I because I do the same thing. They they didn't understand. They're like, Yep, you chew up medicine quick.

SPEAKER_03

My body just eats through it. Yeah, I'm just uh but I went on a loctate and I had a really bad reaction to it. Like rapid heart rate. I was I actually had to get hospitalized for three days because my heart rate did not go down. After that, I was like, nope, I'm done. I'm just getting to the gun, I'm done.

SPEAKER_02

You know, yeah. No, like what Maya, the nurse practitioner, was talking about that we really don't think about is like, okay, we are aging, and you know, there's patients that do get heart attacks that is hemophilia. There's there's there's patients that actually, you know, they have chronic health disease, like they'll have diabetes, they'll have other comorbidities that now they have this hemophilia plus this, and then how do you treat that? Like, for instance, if you have a stroke, if you have a heart attack, they typically put you on a blood thinner. Um, and they're like, Well, what how how are you managing like factor plus a blood thinner? And I don't know, it was just kind of interesting that conversation. Remember that, LA?

SPEAKER_01

Yeah, yeah. I mean, aging as a hemophiliac is a whole new a whole new phase because most hemophiliacs were dying early, you know, so now we're actually getting to those older stages. So it's kind of like we're all learning. Yep.

SPEAKER_02

So uh yeah, it's just it's it's really interesting, and it's really awesome that you know we've been on a few podcasts with hemophiliacs, and it's awesome to connect with you and just share the message. I mean, that's what this podcast is all about. We're gonna be in Vegas next week for uh Hemophilia B coalition, and we're actually gonna do a podcast from the um event, and we're gonna you know see hemophiliax. We actually, LA, you can talk about the shirt that we have designed for.

Building A Business And Big Dreams

SPEAKER_01

Yeah, we're gonna do a little collaboration shirt with the new company that I created, Unheard, with Hemo Life. And um, you can see all my unheard stuff back here. Pardon my lighting, by the way. I was trying to Dr. Joe's a professional with the lighting, and I so I bought this like soft light. I'm like, okay, I got it from Amazon. Like, I'm gonna get some better lighting in my room. And then like I'm trying to like get it set up before the podcast, and I couldn't figure it out. So that's why it's all dark with like this weird light in my face. But dude, I got yeah, I got all my unheard stuff back here. I mean, I've been working, I've been busting my ass, man, to try to create something special, to create my own business, um, be the first in my family to do something like this, you know. And I I I attribute, you know, my desire to have to do great things and you know, my my vision that I've had. Um I contribute that to you know, those the stuff I went through with hemophilia. Like nobody else is like me in my family. Like no one could give a shit. No one can everyone could care less about doing anything bigger or better. They're just like, you know, I don't know, but like hemophilia for some reason, I just felt like it just pushed me to think bigger.

SPEAKER_02

I think we have that all three in common. I mean, I was bullied, you were bullied, Johnny was bullied, like, and that it kind of shaped like, hey, I don't want to treat people like that. Also, by the way, I'm gonna show you what I can do. And it just kind of raised us up. And I feel like hemophilia for us, now looking back, was a blessing. Like, I would not have been where I'm at today. I don't think Johnny, you probably wouldn't be out today. I mean, you seem driven, you want to take care of yourself. LA, you're starting a clothing brand. I mean, I see this, you could call it an issue, a problem, a disease. I think it's a blessing because, man, like you said, it's hard to find people out there that, like you said, give a care or really put a lot of passion in their life to actually become a success. I mean, what do you think, Johnny? Blessing?

SPEAKER_03

Yeah, is it it like is it a blessing for like having that mindset? Is that what you're asking?

SPEAKER_02

Like, yeah, like a mindset, man.

SPEAKER_03

We can't I and I think you know, we all everybody forms it at some. I think it's all gonna be a situational thing, like what LA just said. No one in his family cared, and he wants to be different, and he wants to be the one that stands out, and he's the one that wants to go do something, and he's the one that wants to step up, and that's where he got his drive from. I got my drive from the polar opposite. My entire family is go-getters. My mom started my mom is 57 and she just started her own company. Wow, just awesome. She worked for someone else her whole life, and she was like, you know what? My kids are both doing it. I want to do it. I love that, man. And that's great. My dad, he's been working, been the top salesman at his company for Jesus 14 years now in a row. That's sick. And my sister owns her own company, and you know, my sister kind of started before me, but I was I was honestly the first one in the family that was like, you know, I I want to do something and I want to inspire others, you know, to be able to do something. Because I'm sorry, I don't want to stand at a desk. I don't want to work for somebody else. I want to be my own boss. When I get in trouble, I want to be able to say to myself, I'm the one that got myself in trouble, you know, or I'm the one that needs to fix this. I don't want to depend on somebody else. Yeah, sure. And I want to be that somebody that someone else can look up to, even you know, my employees. I want to be that somebody where they're like, okay, this guy isn't my boss, or he might be my boss at the end of the day, but he's my friend also. Like, I can respect so yeah, I I do think the blessing, and I think we all have our own way of not earning that blessing, but you know, receiving it will come when it comes and it blooms.

SPEAKER_02

I love that. I love that story. Like, I don't know, the fact that you know, everybody, even like you said, like your mom starting your own business, like it feels like you have a very cohesive family and you had a lot of support growing up, like you said, with your friends.

SPEAKER_01

I mean, I t I tell you what, that's that's a that's a Dr. Joe. One thing I want to point out though, and like the thing that I love about the podcast and bringing on guests like Johnny is that you know, you and I, we work in the community. We we get to go to these events. Like next week, we're going to Vegas and we're going to a huge conference. There's a huge percentage of these people who are not thinking like this, that that are down in the dumps, they're struggling, they still haven't made that mental switch to where you know we're sitting here saying, Oh, it's a blessing where we're doing all these great things. There's so many people out there that aren't on this path that we're sitting here talking about, you know, like they're they're struggling bad and in depression. You know, I I'm on the phone with buddies who are, you know, chronic pain. Yeah, I mean, I don't know what I can say and not say, but yeah, struggling. So it's um it's so I I think that you know, when I was talking to my mom reached out to me recently and I I did tell her that the sooner the sooner the better, as far as embracing the mindset of, hey, um, I'm gonna play this hand of cards like it was the hand of cards that I've always wanted. You know, like you have to have that mindset of like let's just just embrace it and kind of flip the mindset a little bit. Yeah.

SPEAKER_03

Well, uh, another thing uh of what you just said is like there are hemophilics in this mindset and everything like that. And you know, you guys hosting these events, you guys are wanting to make a difference, correct? You guys are wanting to make sure they see someone like, hey, if you can do this, I can do this, right? There's a problem though with people these days, they're gonna see that, and it's just like a new year, you know, when 2025 goes around 2026. What do you guys do on that first day? You guys got resolutions, right? Yeah, yeah. But most of those resolutions die out in the first week, and that's what a lot of these kids are doing. They see these things, they see the positivity, but once that door closes and they're by themselves, it's a very small percentage that's going to actually push themselves and actually want to be better because they don't have someone holding their hand. And that's what these kids need is it's it's consistency.

SPEAKER_05

Yeah, yeah.

SPEAKER_03

They need consistency, they need every like or having someone that can talk to them, having someone that can inspire them every day, having that. And I'm not even saying they need it, I need it. Yeah, it's something I like. Well, I like when someone tells me they're proud of me. I like when someone tells me I'm doing good because guess what that does? That makes me want to keep going. Yeah, and I'm sure the same stands for both of you. Yeah.

SPEAKER_02

I mean, LA, that's something that we could possibly do is like a mentorship program where we could jump on like two or three times a month where we can have a QA with people and try to do some personal one-on-one time.

Mentorship Mindset And Community Hope

SPEAKER_01

That's been my that's been my obsession since I started my personal journey on social media. Like when I started bodybuilding and I wanted to make a difference in the community, it was my obsession was seeing all these people suffering so bad. And, you know, I I I remember I I had to get better first before I could help other people. That was my first goal. When I when I did when I hit rock bottom when I was in my 20s, I was like, okay, if I want to keep on living, then you know, uh the only way that I felt like I could I could keep on living was if I did it with a purpose. And so I was like, okay, I'm going to change the way I look, I'm gonna change my behaviors, my actions, everything. I'm gonna rebuild my entire foundation from the ground up. And I documented that entire process. And I was like, I got I have to help myself first. And then, you know, just to fast forward a little bit, you know, last year I I finally took all those notes of everything that I did that implemented in my life to change, and I put it into that book that I made. So the chronic chronic warrior workbook. And I was trying to see if I had it over here, but I honestly dude, everything I ever learned to change to personally change my life, I put into a book, and it's a workbook. You can you can do it every single day. And that was my best shot, man. Like I I've dug deep, I've tried to find every single way the podcast, social media, motivation, everything. But like Johnny was saying, you know, like we have to give them something they can actually one-on-one.

SPEAKER_02

Yeah, like one-on-one.

SPEAKER_01

Because I mean, but we can't we can't be one-on-one with everybody, you know.

SPEAKER_02

No, but we could try to, yeah. I think it's just he makes a great point though. You you do you're not gonna have that support group like maybe Johnny or or me or LA has some people don't have that at all. You need that hand holding to really push that person. So I mean, I definitely think that, yeah, I mean, that's a great point. Let me see if I can find it. Yeah, I mean, that's a great point, Johnny. I mean, like having that. I mean there it is.

SPEAKER_01

Honestly, I don't think I got the respect that I deserve for this book. First of all, if anybody wants to hear this on this podcast, I put put some respect on this book. Chronic Warrior Blueprint.

SPEAKER_02

Yeah, it's good. It's really good.

SPEAKER_01

Yeah, I I the thing is it's simple. It's simple, and that's the that's the power, and that's what I realized when I finally started experiencing growth was it was just being disciplined and on so many simple things. I know like what I what I saw was a lot of depressed people who basically felt like they were um in a position where they couldn't see the light at the end of the tunnel. And I know when I was in that position, I used to think that I had to do something massive in order to finally escape. And what I realized was that it was a bunch of really small things stacked together and creating momentum on a daily basis that helps you escape that darkness. And literally, I put it into this book, simple as I could. And you know, I don't make money off this. So this is just this is passion. This is passion. I don't make shit. But you can get it on Amazon. I'm gonna have to scoop myself. That's it, just mic drop.

SPEAKER_02

So uh no, I think it's great that we're all wanting to help the future of you know, yeah, really the hemophilia, whether you have severe, mild, moderate hemophilia, whether you mean there's women out there that have bleeding disorders too, gone will of runs. So, you know, if you're tuning into this right now, this is a great opportunity to reach out to us. We want to, you know, put you on the podcast, tell your story. These stories really change people's lives. Look, we're just sitting here talking about maybe a mentorship program that we can develop. I mean, he's already got a book, but maybe there's a mentorship program we can develop. Um, and I just think it's I think it's really awesome that we can connect with hemophiliacs across the United States. And like Johnny said, I mean, his experience is different than mine, different than M L A's. And, you know, I mean, it started out with him having a intercranial bleed that almost, you know, took his life. And so I just think it's really awesome that we can share these stories and really build these friendships. I mean, I think LA, you would agree, like most of the guys that we connect with, there's a friendship. And there's, you know, more you know, collaborating that we can do and help each other. And I just think this is a great platform to connect a fellow bleeders like us and really share that brotherhood and also share, hey, we're we're normal, we're we're okay. Yeah, like yeah, we're we're taking care of each, you know, each other.

SPEAKER_01

Also I mean, I'm not normal, I'm not normal or okay, but I'm I just I exist. Don't go that far, Dr. Joe.

SPEAKER_02

We ain't normal, but hey, we we're what I'm trying to say is we're normal people. We're not gonna let this disease bleeding disorder define us. That's what I'm trying to say.

SPEAKER_01

No, no, parent new parents should be encouraged about a lot of things. I I feel like there's a lot of hope for the future. So I think like dude, we didn't have I don't know about you guys, but I didn't know anyone growing up. Like we've got social media now, we've got podcasts, we've we've got people we can look at. I didn't know anyone else. I thought I was the only one in the world.

SPEAKER_03

So funny thing is I only had one friend growing up that had hemophilia, and I met him through the organization walks we used to do, and our friendship kind of died out because uh, you know, it was uh it was more of a forced thing that was done, you know, through their walks and everything like that. Yeah. No, I growing up, I didn't have any friends that were hemophilics, I didn't have any friends that could relate to me or anything like that. I just had my two best friends that on a daily basis put themselves in my shoes and they understood, so they made me feel like I was exactly the same, and at the end of the day, I am exactly the same. You know, having hemophilia doesn't mean you're any different, it doesn't. It's just you have one more step. That's it. Yeah, like one more step. And if you take care of yourself, you got half a step. That's it. And like and then my parents, like uh everybody made me feel normal, everyone. And if you met me, you wouldn't know I had a bleeding disorder, you wouldn't know I had a craniotomy, you wouldn't know that you had a craniotomy, like you wouldn't know, because I'm I'm a happy guy, I have a great life, I have a um fantastic relationship, like I have all the good things going for me. You don't want to get yourself down, you know, of course, too deep into a hole. And luckily, there's been moments in my life where I did, I got I got down on myself, I got upset, I went to therapy, I did all these things, but I didn't find true. Happiness until I figured out exactly what I wanted in life, exactly what made me happy in life. You know, not doing what other people made me wanted or what other people wanted me to do. Like do what they want to do. And uh I think that was the first realization of me that took so long. Because I think high school, you want to be the cool kid, you want to do what everybody else is doing. At the end of the day, what they're doing might not be what you want to be doing. Yeah, and yeah, it took me a long time to figure that out. But once I figured it out, I became a lot happier with myself.

SPEAKER_02

Yeah, I mean, I think you know, your enthusiasm, your success, and just like I said, I keep saying it, but not letting this condition define you and really embracing it. I mean, I I I just think it's amazing. I think, you know, just for future generations, future moms, hey, like I said before, I mean, look at look look at what we're doing and look at how we uh, you know, essentially got through the hard times and now we're dealing, you know, essentially day to day. We're we're not making this an issue. And it's made us who we are.

Closing And Subscribe

SPEAKER_01

We all have different upbringings, but I guess what Johnny's saying is let your kids find themselves. I mean, that that's that's what it sounds like.

SPEAKER_02

So, with that being said, I think that's gonna conclude the podcast. Johnny, it's been a pleasure having you on, and uh just look forward to further connecting, figure out how uh we can collaborate and maybe, like I said, do an event down there and really continue to portray the message that, hey guys, this is a platform that you can share your story, and we're just so excited that you're able to join us on the Hemo Life Podcast.

SPEAKER_00

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 Guayo 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.