HemoLife Podcast

A Mother's Voice On Hemophilia

• L.A. Aguayo • Season 2 • Episode 6

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A mother shares the raw path from diagnosis shock to confident routines, reflecting on ports, weekly infusions, and letting a wild-hearted kid be a kid. We weigh gene therapy’s promise against real-world insurance battles and the mental health load parents carry, while exploring how creative work online can be a lifeline.

• diagnosis as shock, guilt and rapid learning
• resources from the hemophilia center and support groups
• deciding on a port to make prophylaxis possible
• daily judgment calls on bleeds vs minor injuries
• balancing safety gear with normal play and confidence
• modern therapies lowering bleed rates and damage
• nuanced views on gene therapy and long-term data
• insurance, copays and navigating approvals under pressure
• creative skits, audience growth and handling negativity
• realistic take on TikTok Shop opportunities and burnout
• advice to newly diagnosed parents on grief and new normals

Follow Jess on TikTok and Instagram: @learnwithjess
Share this with another mom who needs encouragement, clarity and community


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.

SPEAKER_00:

Welcome to the HemoLight Podcast, your gateway to transformation and empowerment. Hosted by Elliott Guyo, 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_04:

Welcome back to the HemoLife Podcast, the show where we break stigma, share real experiences, and bring powerful voices from the bleeding disorder community to the front of the conversation. Today is an episode a lot of you have been asking for a mother's voice, a woman's perspective, someone navigating life with a hemophiliac child, balancing fear, strength, hope, and responsibility while also balancing real life. Our guest today is Jess, known online as at learn with Jess. She's a digital creator with over 18,000 followers on Instagram and 58,000 followers on TikTok. She's built her platform through entertaining fictional drama skits, and at the same time, she's raising a son with hemophilia. Her story represents thousands of mothers in our community who carry the emotional weight of this condition, the worry, the late nights, the endless appointments, the constant learning and the deep desire to protect their child from pain. Today we're going to talk about her son's diagnosis, her journey through fear and acceptance, what motherhood looks like behind the scenes, how medical advancements have changed her son's life, her thoughts on gene therapy, her thriving social media career, and whether TikTok and content creation can be an opportunity for other stay-at-home moms. Jess, thank you for being here. Let's get started. So Jessica, like for um, I'm I kind of I'm trying to I was trying to think back earlier on where we met. I don't know if I was thinking Boston for some reason. Is that does that make sense? Okay.

SPEAKER_02:

There was it was Washington and it was called Voices of Hemophilia, and it was more, I would say, of a conference type where they wanted more meeting room of input. And yeah, then they also discussed social media.

SPEAKER_04:

Okay. Yeah, I thought it was kind of a unique little gathering. I know Patrick James Lynch was there, and there was a who else was there? There was I forget, but it was it was kind of an interesting like idea to like unlike maybe like hear what good ideas are going around and like how we can you know impact more people through you know social media outlets and and I guess they found you because you started to blow up on TikTok. Did you start that with like sharing your son's journey or was it always like the like the skits and everything?

SPEAKER_02:

I actually started as teaching skits and I shared a little bit about my son, and then um I got a comment that said I was doing it for clout. So I actually took a step back because it for my own mental health, and I was like, that's definitely not my focus. I would never want that to be anyone's perspective. And now that I've been on social media for almost three years, it doesn't matter what you post, people are gonna be negative. I could post a picture of a flower and someone's gonna have something negative to say. But so at the time I still took a step back and focused on different stuff that's not gonna affect my mental health as much.

SPEAKER_04:

So take us back before the diagnosis, before the appointments, before the worry.

SPEAKER_02:

Who who was just um so I was a school teacher for four years, and then during that time I was also going for my graduate and trauma counseling. And I had finished my clinical hours for that, and I was supposed to start my internship for that in May, and then we found out in March that our son had a severe blood disorder. So since then I've kind of taken time away from that and just focused on being a stay-at-home mom. We did happen to call one day care, and it was just they felt very uncomfortable, too high risk to take a child with a blood disorder. And then obviously, my husband and I were like, Do we even feel comfortable with like anyone else watching our son? And it was all new to us, it was a mutation and not genetics, so everything was new. So we were just trying to even figure out what life was going to look like after that diagnosis.

SPEAKER_04:

Okay. So what were what were you and your husband going through emotionally and mentally when you first found out about the diagnosis?

SPEAKER_02:

Uh, I think um just it felt very unfair to him. Like, why does she he have to have a medical disability? I mean, I didn't smoke or drink when I was pregnant. I mean, I took my vitamins and it was just kind of like, what? And I still to this day sometimes go back and think, like, what could it have been? Like, was it that time I used my face cream for acne? And it said, consult your doctor, you know?

SPEAKER_04:

And it's just so you guys are kind of blaming yourselves a little bit in the beginning.

SPEAKER_02:

My husband didn't blame me or him. It was more me, because you know, it was but I you just never know what it could be, you know. Was it the time I cleaned the bathroom with Clorox? You know, you just have all these thoughts, but I'll just never know, and that's also not a positive way of thinking. But that was a lot of it at the beginning was like, why did this happen? Was it something I did? I had a pretty healthy pregnancy, I didn't have to take any extra medications other than like for nausea here and there. And so I think at that moment it was just very shocking, and it was very scary to hear that your son needs weekly infusions, he has to have them. And then they also brought up surgery of a port implant. And I was like, this is so much, I need time to process this. And I think that was the biggest thing was just taking a step back after hearing that news and literally processing all of that.

SPEAKER_04:

Yeah, yeah, that that would be really scary. You know, I I know what I've gone through as a kid, but now that I'm a parent, I don't know. Like it would be so hard to watch a child go through that. So it's it's one thing to go through it yourself, but to have someone that's helpless, it's scary, really scary. So during that time frame, did you feel supported or did you I mean, did you feel like you were navigating this alone?

SPEAKER_02:

That's a tough question. I felt supported. We do have close family, but I think also my parents were somewhat in denial, like, because it's so rare. Like it can't be a rare blood disorder, it has to be something else, right? Like, how could this happen? It's not genetic. And so when I was even researching his symptoms, I saw blood disorder pop up, but it was it was it said genetic, right? Research it more that it could be mutations, and so it was just like we were like, is this really what it is? So we ended up obviously going to a specialist, but before that, I think we were all just kind of like, is it something else? Are we getting the right diagnosis? And so our family was supportive. And thankfully, because they also noticed the bruising from nothing. So even like I'd go to my dad's and all of a sudden we'd be playing, and then the next day he has this massive bruise. And so obviously, my dad was also saying, like, we weren't doing anything, it was just these random bruises. That was his biggest symptom. So um, yes, my husband was very supportive. I was more like, I felt just it was just a huge shock. Like, what is our life going to look like? How is this fair? He's just a baby, like it was it's just a lot to take in.

SPEAKER_04:

During that time, was there like resources like available to you? Like, I I don't know during like when when your son um had got diagnosed. I I know when I was born with hemophilia, I mean, internet wasn't even really a thing. So it's like there was no Googling and stuff, like, oh, what is hemophilia? So did they offer a lot of like resources for you, or were you like, man, who like where do I go? Who do I talk to?

SPEAKER_02:

Actually, yeah. So the hemophilia center that we still work with was amazing. And they sent us stuff because after they told us the news, I was crying on the Zoom call, and my husband's like, You're making my wife very upset. We just need to be alone for a minute.

SPEAKER_03:

Yeah.

SPEAKER_02:

And the next day they sent us a package and it had how to raise a child with hemophilia, which was really helpful. I have read that book. And the thing that stuck out to me the most was um I mentioned how a lot of parents feel it's unfair. So I could connect with them, like, okay, it's not just me. This is a feeling of like guilt and unfairness. And um, and then they also sent me like a packet of just explaining what hemophilia was. So that was also helpful. So I think sending me those resources and giving me time to really understand it was helpful instead of calling me every day and being like, What's your decision? What's going on? I really respect that they kind of here's information and took a step back and said, When you're ready to talk, let us know. So we um I read that book and then the nurse, Becky, still amazing woman, physically came to our house and my dad and my stepmom was there, and my husband and I, and she came in and she answered all our questions and we talked about it a lot more. So he had a blown vein at one time, I think when he was around seven months, I can't remember, and it was really bad. And so that was before he was on treatment. And then we had once he got his diagnosis and we had a nurse come to our house to do his infusion, um, holding him down, trying to find a vein. She had to poke his foot vein. It just made us realize like this, I'm not a nurse, my husband's not a nurse, like this, we can't do this every week. This isn't going to work. So I joined an online support group through Facebook and I asked about ports and everyone's like experience. I found another mom on TikTok and reached out to her too, because she had made a video about her son having a port. And after researching and looking into it, we decided that yeah, this is probably the best step for us to take for his health and making sure he gets his infusions.

SPEAKER_01:

Uh, that's awesome. I mean, growing up, like LA said uh so I have a severe hemophilia. Yes, I'm a uh physician. I have a brother that's 25 years old. He has uh severe hemophilia as well. So I had a port when I was about 10 or 11 years old. I had it for a few years, it got infected, but it definitely helped get through those times when I was having issues with my veins and blown veins. And I don't know, like I know that you said that it's a it was a point mutation, you know, uh, and it's not something that ran in your family. You know, hemophilia is X-link recessive. So yeah, in my family, it it runs in a family, but I have friends that it it was just it popped up. And I think the biggest thing is is like my dad, like he was, you know, he's a big athletic guy, and he's uh you know, was you know, he's a carpenter, and he thought, you know, my my little Joe uh is gonna be a baseball player or this and that. So going into first grade, the first baseball game, I broke my arm and I never played baseball ever again. So yeah, but yeah, I mean, it makes you who you are. I mean, it definitely shapes you, defines you, makes you more resilient. We had a discussion with a previous patient on here that was talking about how it's shaped his life. He was disabled on the last podcast, and uh just kind of just going over how it kind of really it's it's a curse and a blessing, but it really helps uh that I would say patient grow uh and really lean on family and friends for support. Hemophilia is definitely made me who I am today pushed. I know LA pushed me to where where we're at. I don't know, it's it's awesome to hear from you that like you know, in 2025 and even in the previous, you know, years, recent years, that there's a lot more support than when me and LA were diagnosed.

SPEAKER_04:

We've been getting messages from others lately who are just like, when are you gonna bring a mother on? Like, come on. So I was like, I was like, speaking of that, I was talking to Jess and she's gonna be coming on soon. Um, but speaking of challenges, what are some of the challenges that most people might not see?

SPEAKER_02:

I think in the beginning, like one day my son had a fever and he was like, My knee hurts. And then it's like, is he having a bleed? So a child who doesn't have hemophilia, you just assume, oh, maybe he fell hard or he's getting a cold. So there's a lot of situations you're just like, I don't know what this could be. And I know from joint bleeds it can lead to muscle bleeds, and we don't want any problems with his development as he gets older. So I called the hemophilia center right away, and they're like, it doesn't sound like a bleed. And then literally two days later, everyone got sick. So it's just little things like that. You you over question like, what could this be? How can I handle this? And so, like my son bit his tongue while he was eating, and his tongue profusely for two days, and like his whole pillow was soaked in blood. And I called the hemophilia for those two days, and I'm like, Are you sure this is normal? Is there anything else I can be doing? So it's just little situations like that where you just really have to figure out like, what am I supposed to do next? Like, I want to make sure I'm doing everything I can to promote his healing. And again, I don't want him to have any long-term effects as an adult either because that's not fair to him.

SPEAKER_04:

Yeah, yeah, that's key. So tell us a little bit more about your son then. What lights him up? What kinds of things does he enjoy doing? And how do you balance letting him be a kid while still keeping him safe?

SPEAKER_02:

He is like a doer, so he wants to do everything by himself, and he is that kid that's like, don't touch the boiling water, and he still wants to poke it. He is very, very wild as far as he wants to jump and run and do very dangerous things, and he likes to see other kids do things, and then he wants to do those things. So, and he still doesn't really understand. So, we try to keep it to a point to where be careful, but you also in my support group I asked the men, what can I do as a mother? And they said, don't overly put him in a bubble. You have to let him explore and play, and you don't want to make him feel so different that he's scared to be who he is. So we allow him to do a lot of things. He has a little scooter. Obviously, we keep him very safe with the helmet and pads and stuff. But we we try to allow him to do normal things that kids do. I mean, as far as we were told by our doctor, he's on weekly treatments. Yeah, if something happens, we have the extra dosages that we can do. So we try to allow him to explore and be himself. He's very, very smart, he loves dinosaurs, he wants to know all the dinosaur names. He loves to play. Like I said, he's just he's very different than my daughter who is older because we will ask her to do something and she wants us to do it, but he he just wants to do everything.

SPEAKER_03:

Yeah.

SPEAKER_02:

Which is great when he's older, but when he's little, it's like, you can't do that, you know, he's still learning.

SPEAKER_04:

While you were talking about that a little bit, I was thinking about whenever I was a kid, and it sounds so dramatic, like the vision that I picture in my head. I like picture myself like as a kid, like looking out the window blinds and like seeing all the kids playing football. And you know, I I think that I mean, I don't know if I'm making this up in my head, but I really feel like that's how I was as a kid, just being like, why am I why am I in pain right now and they're out there having fun? Like I don't, I don't really get this. Like when I became an adult and I started to look back, I was like, I was so confused. Like I I didn't have any like I like scientific knowledge. Like I wasn't able to put that together. Like there's internal bleeds in my body. That's why I feel that this way, that's why I can't straighten out my arm. So it took me such a long time to comprehend like, dude, like you have a disorder that this is what's happening, this is how you take care of yourself properly. Um, I wish I would have done better or maybe had a little bit more guidance on you know how to take care of myself better because you know, now I have a lot of long-term damage in my elbows and ankles. And, you know, that's even though medical advancements have changed so much. And um, I feel like kids nowadays are getting maybe like less than five bleeds maybe a year, or so maybe even one year. And I was getting that in, you know, one to three bleeds a month during that time frame. So it's just crazy. It's yeah, so it's just it's crazy to see how how times have changed. I wasn't pro, you know, I wasn't on a profidose either either when I was, you know, growing up. It was just like, okay, if you get a bleed, then you infuse. So yeah, everything, everything's really changed. Speaking, like one thing that we like to talk about on the show is the medical advancements. Gene therapy is has come out. Uh, I was curious from my mother's perspective what your thoughts were on gene therapy.

SPEAKER_02:

Well, when it first came out, we were really excited that this was a cure. And the more groups we go to, they are saying that it's not a cure and we still don't know everything because it's still so new. So I'm interested to see the research after 10 years. And then I saw a study they're now looking into cell therapy, so that might be a better alternative. So I I have hope that there's gonna be a lot more advancement, and I have hope that maybe in 20 years there's a cure. But I think for gene therapy right now, um, I don't blame anybody who's on the fence about getting it. And I think a lot of people just need more research before they jump on it. And again, like we need people to do it to have research, but I don't blame people who don't want to do it either.

SPEAKER_04:

Yeah, I was so close to pulling the trigger. What about you, Dr. Joe? Have you ever had a meeting about doing the gene therapy? I sat through a whole session and I was like, I'm gonna do it. And then something fell through. And then looking back, I'm like, I'm kind of glad I didn't do it.

SPEAKER_01:

I'll be honest with you. I'm, I don't know, maybe a purist. That's the best way to put it. Like, I've always been on factor, factor essentially. You put the protein inside the clotting cascade and you form a form a clot. To me, that's what I like. That's I mean, there's uh other therapies that work on anti-thrombin, they work on outside pathways of the clotting cascade, like HimLibra and all that. I don't know, like gene therapy. I mean, my opinion is is okay, yeah, like I would have to see years, I'm talking five, ten years of like successful treatments because even with the COVID shot, and you know, they're already looking at what you know, down the road, this COVID shot was used for emergency use, but it also caused myocarditis in adolescence, which is a heart inflammation. So they have meds out cholesterol meds that increase your risk for diabetes. They found out that they find like there's so many things that over like a 10-15 year span that we don't know. So, in order for me personally to switch or recommend it, I would have to see a lot of years of data to really jump on board. I'm not just gonna jump on board with a five, six-year data set and just a new company. Like I said, factor, you use it, you clot, that's what I'm good with. Um, I don't know. Yeah, I mean, you got to think back to the story of how factor actually came about. Do you know the story? Yeah, so there's a physician with severe hemophilia, and he was working on getting, you know, a clotting factor. Uh, and I mean, back then they didn't have all the advancements that we had and all the compliance that we have. And basically, it goes in a roundabout story that he got in a car wreck and he needed this factor, and he gave it to himself and it worked. And I mean, I'm sure that's not exactly what happened, but there's certain lines that he he had a medical need for it, and he was in the process of developing it and whatnot, and it worked. And so, I mean, we're seeing that back then, and we're seeing the advancements that now you can just do a subcutaneous shot, like you're giving yourself like a diabetic shot that's helping patients clot. And I think it's amazing. So, I mean, yeah, to answer your question, I I would need to see a lot more data.

SPEAKER_04:

So, to um go into our next segment, I'm actually really excited about this. And um, I think Dr. Joe will love this segment too. Him and I, you know, Dr. Joe's an entrepreneur, successful being in business, you have to figure out how to utilize social media and marketing. And so, what's really cool and unique about your story is that you have built a really strong online presence, like 18k on Instagram, 58k or so on TikTok. Is that about right?

SPEAKER_03:

Yeah.

SPEAKER_04:

Yeah. So you're you built that through fictional drama skits, then? Is that what's kind of really blown you up then? Or isn't it? That's she's got some impressive numbers. And and TikTok shop, I mean, I want to I'm gonna dive into it a little bit because I I love it. And I think there might be a way for like maybe other stay-at-home moms to maybe utilize TikTok shop and try to, you know, be able to take care of their kids, stay home. So tell us about your social media journey. I mean, I've been on a social media journey myself, but I haven't reached those numbers.

SPEAKER_02:

I did start with teaching skits and I started sharing some of my own stories just as an outlet to do for fun. Um, and I got a lot of negative feedback and I thought, you know, I don't want to ever paint teaching in such a negative light. So is there a way I could do something that's different? I love to write, eventually I would love to write books. So for me, I just enjoy writing fictional storylines, and so I thought there has to be another way I could do that. So then I kind of transition into more personal skits of people's lives. And my goal was to also show that through life, no matter our past, it affects how we react in a lot of situations, but we are able to overcome those negative coping skills that we have developed. And so I eventually started a baking series by accident because one of my characters went into a bakery and had to deal with this mean counter girl. Yeah. And it kind of just took off. And a lot of my community was like, hey, we want to see more of the bakery and what's this about. And I really base a lot of how I create off of my feedback. And so, you know, they're like, we really want to see more of the bakery. So it kind of just morphs into what it has become. And I feel like in a personal level, I like the bakery skits because I get my creative outlet, but also if someone leaves like a negative comment, it doesn't really affect me because it's a fictional skit. It's like, okay, we'll be mad, you know.

SPEAKER_04:

Like people will be like, I'm never that's actually a really good point. That's really cool, actually. I didn't think about it that way. Because I was getting ready to ask you about that, like the negativity that most people have when they see stuff like that. I mean, is that like was that like most of your comments in the beginning? Some I I've read through like your comments and stuff and seen like you get a lot of engagement. So I'm sure not everyone's kind.

SPEAKER_02:

Yeah, and I think on one hand, you have to take feedback for what it is too. Like, there's a difference between like sometimes people be like, I didn't like this or that, and I try to adjust. Obviously, you can't make everyone happy. And there is a lot of times you get really negative feedback. And in the beginning, to be honest, I almost quit. I told my husband, like, I just I can't, maybe I'm not meant to do this. Yeah, and my husband's like, That's a stranger, like you don't know who that is. Like, who cares? And he made a good point. Like, if I was walking past somebody on the street and they said, That's an ugly shirt, you take it for what it is, and like, yeah, maybe they're having a bad day or they're jealous or whatever. Yeah. So, you know, you have to kind of think of it like that. And I have responded to people who've been negative before. Just recently, someone wrote a comment like, This is like a high school musical. And I said, I keep my stuff PG. There's little voices listening, like sometimes editing my videos in front of my children. I'm never gonna put anything that's cussing or anything like that. And they responded, I actually like your skits. I'm sorry, I did not sleep well last night.

SPEAKER_04:

So it's interesting because you know you're playing a fictional character, like you said. So do you you do you ever feel like so? Like, I'm trying to, I'm trying to think about how to word this. So, like it's easier for you because you you feel like you're not being your true self-like, you're not showing who you really are. You're you're playing a fake character. So if they if they say anything, you're like, I don't care. That's my that's somebody I made up. It's not me. So do people really so none of it's you though? Like are you completely is completely completely a different character, or is some of it actually just I would say they're so I have three characters, right, that I focus on.

SPEAKER_02:

I would say they're all part of me in some way. Like Larissa is the snarky countergirl, she's like my internal thoughts, but I would never say, right? And then he is my over pleasing sweet character, and that's also a part of me. And then the assertive manager is also a part of me. So in a way, they're all part of me. And sometimes also my skits, I have them say stuff I would never say just to make it more dramatic. So, yes and no. But I do notice, so with Veronica, I don't wear a wig. I think people think I am hurt a lot because they'll say, You handled this incorrectly, you shouldn't have done this. But with any other character, I'm wearing a wig, they will put it in the third person, such as Candy shouldn't have done that, Candy shouldn't do this. So I think sometimes people still get confused of the reality of the situation, too. So I created a song that says this is just a skit at the very end. I heard that.

SPEAKER_04:

I heard that on the last one. That was actually really cool. I thought that was unique. How did you just implement that that part? That song again. Okay.

SPEAKER_02:

I did because I had a video that got millions of views, and people are very like overwhelmed with it in the comments of like, I hope Jared's bakery shuts down. I would never work. It's like this isn't real, guys.

SPEAKER_03:

Yeah.

SPEAKER_02:

So I just try to remind people in a fun way.

SPEAKER_04:

Like, it's people love that stuff, man. Though they they want that's so cool. They get that people are getting invested into the storyline like that. Social media, like it drives me crazy. I built a platform on on for Hemophilia X. I started 10 plus years ago, and I'm obsessed with marketing. I truly love marketing. And so, like my hemophilia journey was so weird because it was like, I want to be an advocate and and I want to be seen, I want to be heard. So, what do I have to do to stand out in this noisy world? And ultimately, um, I chose bodybuilding because I was like, that's something that if I can create this like crazy physique then and become undeniable to look at, then that'll give me an opportunity to have a platform to then speak, then share my story. And throughout that journey, I made so many mistakes. There was a time frame, it probably took five years first, and I had a really nice following, like a really engaging following on Facebook. Facebook was more relevant at that point. And I I would have a bunch of haters, but was I would also have like an army, which was really weird of like I wouldn't have to say a word. People could make fun of me, say whatever, and they would back me up. They would, they would, and they would be going back and forth in the comments. But I I would what where I was kind of going with that is that because I'm so in love with marketing and even characters, character building. Like, what how do I want to present myself as my real self or a fake self? And you start studying other people and you're realizing, oh, well, this guy's this guy's blowing up over here and he's doing some kind of weird prank. This guy's blowing up and he's playing. I I know he's playing a character. That can't be his real personality. He's being a jerk. He's like, you know, but like when you elicit emotion or reaction, you start building. It's like, it's like, you know, whether the people are talking good or bad about you, it's a good thing. You know, like it's as long as you're getting attention, it's a good thing. So attention is currency. And then let me try to get back to where I'm going, is that I started making some big mistakes and I started losing a lot of people and a lot and I lost a lot of respect during my journey because I started to experiment. And like a lot of these things that I would say or do, it was just for marketing purposes. It wasn't truly me. Like that was a long time ago. I've really honed back in on finding my genuine self, my genuine voice. And uh it's again, I've been able to build a big enough community now to where you know, stuff like this, the podcast is here. And um, you know, we we've been getting contacted now by other companies who want to participate and be a part of it, and just all the private messages. When people do take time to reach out and show appreciation for the content that you're producing, it's that's what like keeps you going. And you know, I I know when I set out, it was like, okay, I just want to help one person or two people, and then all of a sudden it became a hundred, and then that, you know. So where do you where do you like with your social media journey? Um, where do you want it to go? Like, where do you where do you kind of see it? What's a goal for you?

SPEAKER_02:

That's hard. I don't know. You know, I think about it a lot. It's something I think about, like I said, I think it's all a journey and we all make mistakes, right? We're all living and learning for the first time. So I try to have goals, but also I know those can shift as well. Um, and I think when I eventually finish my internship for counseling, I would love to also have a social media presence focused also on mental health more.

SPEAKER_03:

Yeah.

SPEAKER_02:

And so take it more on a personal level. I just think right now um the bakery skits is more focused on what works right now. And I think with social media, everything is always evolving and changing. So as much as I can say it, my view is this, it may be completely different.

SPEAKER_01:

I think you know, the mental health, especially in hemophilia, and I've mentioned this at a few conferences I spoke in the past at basically hemophilia, it's a bleeding disorder, but it's a bit it plays, you know, on your you know, your your mental space in in a lot of aspects. I mean, you're always thinking, at least for me in LA, wait, before I do that, I have to confuse. Wait, you know, you're constantly thinking about like how is this going to affect you? And a lot of hemophiliacs, let's be honest, they suffer from depression. I mean, you have chronic pain, you have you're anxious about things. And so I think part of hemophilia, you have the anxiety, depression, sometimes, you know, mood disturbances as well as some psychiatric issues. But I would just say that it's it kind of goes hand in hand. A lot of the hemophiliacs, including myself, have struggled with depression or anxiety. And so I think it's a great topic to lean into, you know.

SPEAKER_02:

I think for us as parents, it's just the anxiety of making sure we can get the medicine covered because my husband's this last year, the insurance changed. So they were not the new insurance company was not going to pay as much as the old. So our copay last year was$2K a month and it went up to$8K a month.

SPEAKER_03:

Yeah.

SPEAKER_02:

And I mean, just hearing that alone is like, holy crap, that's a lot of money. And so we had to get on there and ex because they were confused why why his medication was so like expensive. So thankfully, the lady we talked to through the pharmacy of the insurance company was very kind, and she's just like, I've never heard of this. I can imagine having to poke my child with a needle every week. I didn't even know this was like a thing. So we explained it to her, and luckily we have state supplemental insurance, which is also stressful. So once a year you have to send in your pay stubs, your tax information, all of your bills. Your it's just you have to stay very, very organized. And so you have to send that in. And then we've never been denied. But I guess for me, it's a little bit of an anxiety. Like, what if they say no? What if something happens? And yeah, it's like, what if my my husband doesn't have any problems? He's never been laid off. But it's just also that back burner is like, what if he got laid off? In a car accident, and then the insurance changed, and it's just like all of these things, like of a parent staying on top of it for him, but also things are out of my control, and I just always want to make sure, like, because when that insurance change happened, we had to use his backup dosages for bleeds because it was a two to three week wait before the supplemental actually picked up and decided what they wanted to pay.

SPEAKER_01:

Yeah, I mean, I think navigating the healthcare system, I'm in the healthcare system, obviously, but being a patient with a severe bleeding disorder, you talk to doctors, you go into an ER, you're talking to insurance companies, they don't get it. Believe it or not, they don't get it. You're like, time out. My son has a bleed, his mouth's bleeding, his toe, whatever it may be. And they're like, it could be two weeks. You're like, excuse me? Like, we have a life-threatening bleeding disorder. Like, I don't know, just talking to insurance companies. I mean, I'm a physician and I will call, hey, Dr. Millesi, yeah, I have a severe bleeding disorder. And I think back, I'm like, wait a minute. Imagine a non-physician calling in, and it took me two hours of yelling and screaming. Really, you you really realize that, like, yes, we have a severe bleeding disorder, but to navigate the healthcare system, there's so many people that don't get the urgency. I mean, LA, like, we've all been there.

SPEAKER_04:

Uh, it's we got our struggles this year. We yeah, I mean, it took us a couple weeks, man. We were on the phone. We had to call the um attorney general. Attorney General. I mean, we had to reach out to so many people for me to get my meds this year. It was crazy. Yeah, we luckily we had help and we had this one guy that was man, he was so smart. Yeah, he knew how to say the right words and which was but after that experience, it really opened up my eyes. I was like, okay, well, if I didn't have him who certain things and like was using these different laws and stuff, like that he was you know, saying and all those things he was saying, I was just like, um, and he finally got through. I was like I was like, I was like, if he can if if if it took him all that effort to to barely get it done, the regular person will not be able to get it done. So yeah, that's crazy.

SPEAKER_01:

So real quick on Yeah, real quick, it's good to have, I guess, you know, this podcast because it really shows that like even a doctor, even a guy that's been doing this for quite a bit, meeting with patients with the Humalife podcast, it's the struggle in 2026 soon going, it's still gonna be there. I mean, we're all signing up on opening. We battle it every year, it never changes. We battle it every year. Like it's something like we talked about gene therapy. You know, you wonder why why don't we have a better health? Like, gene therapy is great, but what about this? This is here, right now, that's a problem. And so, like, maybe by you know having this podcast continually, you know, produced and get more followers, we can maybe develop something where we have an advocacy group that if you ever get in a bind with your insurance, we can reach out. I will help you reach out. Like, I think we all have to lean on each other, whether you're in whatever line of work, we can all help each other. Hey, this is what I did, this is what I did to get it to where you know you get that script filled.

SPEAKER_04:

Yeah, I mean, if people are listening and they don't they don't have that support system or they don't know where to go, you know, reach out to to one of us. We we know someone who can help, you know.

SPEAKER_02:

And I know from like a mother's perspective, when we had to call the insurance, I told my husband, you're gonna have to do it because I get too emotional. I'm not like angry, I'm just like I get very emotional and I start crying, and that's not helpful either. So I was like, I told my husband, like, you're gonna have to handle this one, but at least I have that support of my husband. You know, some women, if they're a single mom, they're probably emotional too, like on top of trying to pay their bills and explain this to somebody, like I felt like it's not that hard to understand. You have a bleeding disorder, your blood doesn't claw, I need medicine. Like, that's what it is. Sorry, it's expensive. I didn't come up with the price, so this is what you need help with, you know. And I've I I've had to just tell people too like, if he doesn't get it, he will die. I mean, before there was treatment, you live till at most age five, you know. So this isn't like something we could just maybe take. This is life or death for him. Yeah. And I think that's what's hard too as a parent, is like it's scary to think about sometimes.

SPEAKER_04:

Yeah. Yeah. You know what's interesting. I uh a mom just reached out to me yesterday on TikTok. She I which TikTok is doing better now. We've been posting a lot of the reels from here on the TikTok, the human life TikTok page. I've been getting a lot of engagement there, which is really, really cool. But a mom reached out to me and I asked her if I could interview her because of what she said in her message. But she said that her she had two sons, 23 and 30, that passed away. And I was like, wow, can you? I mean, I don't think I've heard a story like that yet. Um so I can't imagine. Yeah, I'm I don't know. I'm kind of getting it kind of like makes me just feel weird, gives me the chills just thinking about it. Like, so I mean it's happened. Obviously, some I mean it happened, so it's there's still a possibility, I guess. For yeah, I mean, I I know I've had a friend when I was coming up, I was meeting people. Um I I've I've known multiple people who've passed away. I I always wonder when I see these deaths on on social media, like what happened? Was it was it hemophilia related or was it was it did they do drugs or like you know, like what what happened? And sometimes I hear, oh, it was an abdomen bleed. I mean, those are the the most common ones I hear is abdomen and and head. Those are the two that are like that, you know, that got them.

SPEAKER_01:

I actually had a couple buddies die in COVID. Like really weird. They died, like they got COVID and they died. I don't know. It's probably unrelated to their hemophilia, but I had a couple friends die in COVID.

SPEAKER_04:

So yeah, yeah, I've got a couple names I'm thinking of. Uh so it's it's sad and it's it's yeah, it just really makes you think that at any moment, you know, something could happen. I mean, like get a head bleed, or like if you I get get punched in the stomach or whatever, you know, I don't know. That's weird. Do you think that there's an opp a realistic opportunity for other moms, stay-at-home moms out there to have to get an extra income, whether it's full or part-time, using TikTok shop?

SPEAKER_02:

Yeah, with TikTok shop, I kind of got burnt out. I haven't been posting as much. You do have to, it is hard work. You have to post probably about like two to ten times a day of shop videos. But I mean, if you are a stay-at-home mom and you focus solely on TikTok shop, I do believe there is money in it. I think it also takes time. Most people, most of the money I make is from videos from months ago. So yeah, sometimes it takes time. And it again, it's just with learning what works for you and a person. And I think with social media, um a lot of people mimic other people, and I do not think that works. I think you have to find what works for you because you can see five different successful TikTok shop affiliates, but they're all different because they're we're all different people. So what I would buy off is not the same thing you would buy off because you're a different person and what resonates with you is different. But I do believe um social media for TikTok shop specifically, I do believe you can make money in it. It's just I don't want it to be painted as it's easy and it's quick. You have to like my mom would have to watch my kids all day so I could make 10 shop videos to have for the week. And I just got a little burnt out on that on top of doing skits and I post on multiple platforms.

SPEAKER_04:

I feel like the volume has to be really high with that.

SPEAKER_02:

Yes, it does. Yeah, and you have to, it's like a job. You have to wake up in the morning, see what's selling, make videos off that. Then you have to research what products have enough in stock, and then go off that to what's going to work for your community. Like, I sell lipsticks, so I better find a really good lipstick that's in stock, buy a good company. It's just constant work. Every day you're waking up. The people I see who are successful, it's they're waking up and they're working at it every day.

SPEAKER_04:

Study and screw, like, oh, it's in I messed with it for a little bit, but I I I actually I actually made a decent amount on like one video, and it was and it was a video that I gave my girlfriend my phone, and I was being so like I was like, I wonder if I created a stupid video, like if it would like just what would happen. And it was a tank top, and I was like, it was really hard to get on and off. It was like stuck on my body, and I was just like, I was like, Oh, you should buy the shirt. Look how easy it is to take off. And I'm like, like I couldn't get it off. And I'm like ripping it off, and I was like, Oh get you one. I swear it blew up. They reach out to me, said, Can we put ad money behind your video and boost it? I was like, Yeah, and I made a decent amount, man. I mean, I forget what it was, but um, I was like, over a being stupid, like that's why I hate social media. It's like act stupid, you'll get rewarded for it, you know? Be genuine, try to make an impact, try to teach people great things. You're swipe, nope, gay, boring, boring, whatever. We have so many new moms, just newly diagnosed mothers that are reaching out for the moms who might be watching. You know, they're sitting in the hospital room or crying in their car or feeling like they just don't know what they're doing. What would you tell them?

SPEAKER_02:

It gets easier with time and it will become your new normal. That was the advice I got, and it seemed weird at first, but that is the advice that stuck with me because every week we do an infusion, it's just normal for us, right? And we get his supplies and all of it becomes your new normal. But I do think in the beginning it's also okay to you have to grieve like Joe, Joseph, or I don't know if you like to be called Joe, but Joseph Joseph was saying like his dad had a hope of football. And we kind of did the same thing. My husband's, you know, 6'4, big guy. We thought if he wants to play football, you have to kind of grieve the life you had expected or hoped for, and that's okay too. You know, give yourself that time. It's okay to feel it's unfair. It's okay to feel like what is my life going to be? Give yourself that time to fill those fillings and then know though, through that you will it will get better and it will seem like this is normal.

SPEAKER_04:

Awesome. I love that. I love that. Yeah, well, thank you so much, you know, for sharing your story, your strength, and your honesty with us today. Um, I know your voice is gonna represent a lot of mothers in our community. So uh for everyone listening, make sure to follow Jess on TikTok and Instagram. It's at learn with Jess.

SPEAKER_03:

Correct.

SPEAKER_04:

And uh share this episode with another mom who might need encouragement, clarity, and community. Um, so yeah, thank you so much, Jess, for coming on. And thank you. We appreciate your time. Yeah, thanks for having me. Thanks, Dr. Joe for being here. Yeah, happy. Bye.

SPEAKER_00:

Thank you for tuning in to the Hemo Life 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 Emo Life Team, keep pushing forward, strive for excellence, and remember you are the architect of your own desktop. Until next time, stay strong, stay inspired, and continue on your path to an elite life.