Abbie: Hello, and welcome to the BioSupply Trends Quarterly Podcast. My name is Abbie Cornett, and I am the patient advocate and engagement specialist for FFF Enterprises. This podcast is brought to you by BioSupply Trends Quarterly.
In this episode, we’ll be discussing living with hemophilia. Today, I have the greatest pleasure of speaking with Talon Lesle, a hemophilia patient, to share his experiences.
Abbie: Hi Talon, it’s such a pleasure that you agreed to do our podcast today. For our audience, I’d like to introduce Talon Lesle. He is a hemophilia patient, and he’s here today to tell us a little bit about his journey with his disease and explain his medications a little bit and some of the things that are important in his life.
So, Talon, thank you so much for being here today.
Talon: It’s an honor to be here working with pharmaceutical companies. There’s nothing really that helps more with hemophilia than having a good pharmaceutical group in my opinion. Growing up, they helped my mom get in touch with local foundations and charities to get me started in a community where I could learn about my illness.
Abbie: Let’s start at the beginning. Tell us about what hemophilia is, and then tell us a little bit about what it was like growing up as a child with hemophilia.
Talon: So, hemophilia is a pretty rare bleeding disorder, and I explain it to kids as like, you all know who Wolverine is from the X event and how he heals really fast? Well, I’m the opposite of that. I don’t heal fast. I heal really slow. So, it’s just an easier way to teach kids and people how it works.
Abbie: I heard you speak before, and you were telling the audience that a number of your family members are carriers, but you’re actually the only person, is that correct, that has hemophilia in your family?
Talon: Yeah, I’m the only known person in my family’s history to have hemophilia. Even though there are carriers, and there are almost a dozen boys in the family now, I’m the only one.
Abbie: That’s kind of rough. I mean, it’s wonderful for the others. So, what was it like growing up as a child with hemophilia?
Talon: Growing up with hemophilia, I’m sure my family was a little bit more like a rare case. They wanted me to experience everything that my older brothers and sisters would, just that they knew that I had to be cautious of my condition and how I went about it. And, they would constantly remind me. Being a toddler, I had knee pads, elbow pads, a helmet that I wore till I was about in kindergarten, and it protected me, and I’m very grateful for that actually because a lot of bleeds start younger when you don’t know the difference.
Abbie: How did your parents first suspect that you had hemophilia?
Talon: So, my parents didn’t know I had hemophilia. They were very concerned about some bruising that they found on me in a crib. I was rolling around I guess on a toy. It’s about three months after my birth, and I had unknown bruises. So, they took me to the hospital. The nurses let the authorities know, I guess. And my parents were then separated and questioned by child services until the blood group work came back.
Abbie: That would have been very traumatic for your parents, but I can understand why. You have a baby that’s bruised. That’s not normal. So, what were some of the major challenges? You said that your parents wanted you to live a life similar to your brothers and sisters. So, did they allow you to participate in sports? And what was your school life like?
Talon: So, my parents let me participate in sports and I played soccer for about 10 to 12 years on and off. But growing up, elementary school was a little bit harsh as far as like people picking on me because of my pads. Or I had an undershirt arm that held up what was called the central line at the time, and it was about an eight-inch tube that went to my heart and gave me my medication. And that little like undershirt would keep it tight and safe. And I’d get picked on because people thought it was like a little odd or whatever. But, you know, my mom’s only like, it’s fine, it’s not a big deal, and I just stayed positive. Living with an illness, any illness, I think it’s key to be positive. And then, moving into middle school, I changed my medication, and I had my central line removed and I started doing self-injections.
Abbie: We’ll talk more about your medications later, but what are your medications, and what was your medication protocol when you were a kid? And did you have to do that yourself?
Talon: So, yeah, my medication protocol was I would take my medication Monday, Wednesday, Friday prophylactic. And then, if I had like a soccer game or event on the weekend, I would infuse that day also — to do preventative bleeding.
Abbie: Cause you’re going to get hurt playing soccer. Yeah, my kids played soccer. I get that one.
Talon: Yeah, and I don’t know, something about hemophiliacs — we’re like the roughest kids apparently.
Abbie: Oh, you like to live on the edge.
Talon: Yes.
Abbie: I was going to say that’s probably it. So, at what point did you feel like you were actually in control of your medication and your disease? Or is it still kind of an evolving process?
Talon: No, my mom was very very adamant about me learning about my condition early. And I’d say that was key. She taught me how to infuse and how to prep and how to take care of myself from a young age, stressing how important it was to be mature about my condition.
Abbie: I was going to say, as a patient advocate, I see a lot of people that never actually get control of their medications and their illness, and they rely on other people, and that doesn’t help outcomes in the long run So, your mom definitely did the biggest thing. When you talk about your mom, it sounds like she had a really big influence on your life, and my follow-up question was going to be: Who are the people you admired while growing up, and how did they influence your life? And where you are now?
Talon: OK, I mean, I have several people. I would say firstly would be my first mentor in regard to he was also my best friend growing up. From what I remember, he was several years older than me. He had hemophilia, so he kind of taught me how to live with it. You know, what’s going on with my body and how to deal with it. And, unfortunately, he passed when I was about 11.
Abbie: I used to work for the nonprofit in DC, and I am very aware of the attrition rate for hemophilia patients. It was terrible.
Talon: Yeah. And then, you know my brothers and sisters were always there to pick me up when I fell. And my father was there to always push me forward and keep me positive. He would always say like “stay positive in whatever you do,” you know, there’s something that could always be worse, so just focus on the positive and it’ll help you
through your life. Or my mother, she would also do the same thing, but she was more the caregiver, you know. She’d take care of my every need. She’d see something, a bruise. OK, we got to get on that right now. Let’s take your medicine; let’s ice it. You know, practice RICE. So, it’s rest, ice, compress and elevate.
Abbie: I was going to say I knew what RICE meant, but I figured a lot of our listeners might not know.
Talon: So, that’s right, and that’s a very important thing for hemophiliacs is to control the slowness of their bleeding before they infuse or even while they’re taking medication.
Abbie: In the presentation you gave, you said a story about your mom had actually learned how to give you the shots by doing it to herself first. I mean that’s amazing. There’s a lot of people out there that don’t go that extra step. That’s pretty special.
Talon: Yeah, she’s special. So, like, one of the things she would do is she would have the nurse come out and teach her, and they would practice. And then she’d start practicing on herself because she didn’t want to hurt me more than she had to.
Abbie: Yeah, that’s a good mom. So, I know that you’re involved with, you have a real passion for giving back to kids with chronic illness. Can you tell me a little bit about what you’re involved in, or tell our listeners about it?
Talon: Yeah, so one of the things that I’d like to do is I’ve been attending a summer camp for terminal illnesses or diseases — whatever you want to call it — that take kids from all across the nation. I don’t think they’ve ever turned anybody down. It’s called The Dream Street Foundation — the Dream Street summer camp. It happens once a year, and I’ve been doing that for 29 years.
Abbie: Can you tell us a little bit more about it? I know that it’s located here in Southern California, but how many kids do you usually take in a year, and what is the medical support for those kids?
Talon: OK, so usually — before COVID, we usually take up to, I think we had numbers up to around 130 kids, and medical staff would be there. There’d probably be I want to say around 30 medical staff on hand at all times. There would be a nurse in every cabin or a doctor, and they would have med stations stationed throughout the camp. If you need something, there’s a nurse at every activity that has notes on every camper basically, and their special needs and how to treat them.
Abbie: That’s amazing. It sounds like this camp allows kids that might not have the opportunity to actually get out and do fun kid stuff — no matter how ill they are.
Talon: It was the first place that I actually felt like a kid because I could do whatever I wanted with them and be with other kids that had similar illnesses. But we were all going through the same thing, so we felt a special bond, you know.
Abbie: And to be able to do those things, that’s pretty amazing.
Talon: Yeah, they never said you couldn’t do it, you know. Like kids with sickle cell, they often can’t go swimming because the temperatures are too cold for them. And they make sure the pool’s heated right for them. And when they get out, they have warm towels and everything. So, the kids can do whatever they want.
Abbie: You know, I’m sitting here as a mother thinking that I can’t imagine the feelings of, one, I want my kid to experience this, and then, oh my gosh, I’m sending my kid to a place where they could get hurt. And, you know, that’s got to be a huge stress on a parent.
Talon: Yeah, I remember my mom just said she was nerves the first week I went. Oh, she knew that I would be in good hands.
Abbie: When I heard you speak, you mentioned that your future goal is to actually work with the camp.
Talon: Yeah so, I’ve been working with the camp for several years, but one of my future goals is to kind of take over running the camp with my best friends that have gone there or been raised through the program or attended it.
Abbie: I think you’d be an amazing role model for that.
Talon: Thank you.
Abbie: Let’s move on a little bit to where you are now right in your life. Taking over the camp or working with the camp on a more full-time basis is one of your goals. But currently tell me what you do.
Talon: So, right now, I live in LA, and I work in production, mostly in television, music or live events.
Abbie: Does that require a lot of travel?
Talon: A good amount. Right now, I’m traveling between here and Riyadh, Saudi Arabia, and I’ll be there for about a month.
Abbie: I’ve done a number of articles on traveling with medication, and I deal with patients with a lot of different disease states. And you mentioned before some of the things that you should do when traveling with your medication. It’s kind of a long checklist of items, but what would be your biggest recommendation, and how has traveling improved as your medications have changed?
Talon: OK, so my biggest recommendation would be travel insurance.
Abbie: I always recommend that.
Talon: Yeah, whoever you’re traveling with, make sure they know about your condition and how to handle it.
Abbie: And I always recommend to get the insurance to get you flown back to your doctors.
Talon: I also wear a medical ID bracelet or have a special watch that can have your information. Also have an ICE number in your phone in case of emergencies.
Abbie: That’s a good idea.
Talon: You know, all these steps are just precautions. But another big thing is to talk with your doctors first about where you’re going to see if you need anything specialized. Or, if you can’t get your medication, make sure you bring enough if you’re going to stay there that amount. And then I’d say an additional half that amount. So, when I go, I’ll bring like six doses for a month just in case. You never know what’s going to happen.
Abbie: And, I’ve had a lot of patients run into trouble when they get to TSA or whatever the equivalent is in another country when they have medications or they have needles or they have medical equipment. Has that happened to you? And what would you recommend for patients that happens to.
Talon: Yeah, so that’s happened to me in the past. TSA’s gotten a lot better. The big thing is if you’re carrying liquid, you just have to let them know beforehand. But always travel with a medical note from your doctor. That will help you get your medications through security at different countries without an issue usually. For me, I’ll carry a special cooler that has all my medication and everything in it, and I have a quick access bag so that TSA can see it as it’s coming through and they can easily identify it.
Abbie: I know a lot of people that have to travel with those bags. They just have medical equipment or medical stamped on the side. So, you’ve been kind enough today
to offer to show our viewers and listeners your medicine you use and how you transport it. Would you mind setting up and showing everybody?
Talon: Sure, no problem.
Abbie: I’m just going to move this out of the way to let you show right here if you can see this a little bit better.
Talon: So, this is not the normal case that I have. So, I usually use this case, and this lasts about a day. This is a daily case for my emergency breakthrough bleeding for
Advate. And then this is for my Hemlibra. This device will last about 72 hours and has an internal thermometer just in case.
Abbie: And this has to be controlled at what temperature?
Talon: They say usually between 40 and 70.
Talon: So, I’ll show Advate today. I already did my Hemlibra. With Advate, it’s an injection into your vein. With Hemlibra, you take it like insulin, and it’s just in the stomach.
Abbie: Like the subcutaneous fat?
Talon: Yeah, it’s very easy.
Abbie: So, we’re talking a small needle?
Talon: Oh yeah, I can show you all the needles and stuff.
Abbie: No, that’s OK, that was more just a question I was asking. That was me being nosy.
Talon: Yeah, it’s a tiny needle. I’ll get everything ready now.
Abbie: You have to do your medication every other day now?
Talon: No, I do it just once a week.
Abbie: OK, how has your treatment protocol changed from the time you were younger until now? Has it gotten easier?
Talon: Yeah, I mean it’s a lot easier. There’s a lot less prep, a lot less things to carry around. Like now, I just carry this bottle basically with a syringe needle versus this giant bag that would only be about a week’s supply, where this is like six months.
Abbie: That’s amazing.
Talon: Yeah, I just take this for like breakthrough bleeds or if I know I’m going to be doing something ridiculous I probably shouldn’t be doing.
Abbie: Like parachuting?
Talon: Yeah.
Abbie: Yeah, don’t do that.
Talon: Or going in a race car or something like that.
Abbie: So, one of my daughters called me from a scene one day and said I’m getting ready to jump out. I’m like, why didn’t you tell me beforehand? And she’s like: That’s why.
Talon: All right, so the first step would be cleaning your area or getting a mat that’s sterile. This mat’s actually provided by the manufacturer. It’s clean already. Then, you just identify a vein. We’ll do this one since it’s really easy. It’s easier to see because I have like a track from my mom doing it the same spot.
Abbie: I was on IVIG for years, and I’ve got the same veins, the scarring.
Talon: So, I’m right-handed, but I taught myself how to do it left-handed to save both my veins.
Abbie: That’s really a good idea.
Talon: So, I clean the area, prep. I mean, once you do this enough.
Abbie: It’s just habit?
Talon: Yeah.
Abbie: I have a good friend that’s a pretty serious type 1 diabetic, and he’s about my age and he just doesn’t even think about it. He tests himself and he has a monitor. It’s amazing how far medicine has come from when it started until now.
Talon: Oh yeah, I mean growing up, like I said, I had a central line, and my mom she would place like a sterile mat out that was about this big, and it would have — it was meticulously laid out in like cycles of what happens next and how many times you can clean it. And it would take about 30 minutes for the process of just cleaning everything, getting all ready, and then doing injections.
Abbie: You said you had a central line for how long?
Talon: Almost 10 years. At the time, I was told it was the record.
Abbie: I was going to say I’ve had a central line a couple of times, and I think my maximum was like two or three weeks. I can’t imagine that.
Talon: Yeah, it’s tedious to take care of. My mom was very good at it.
Abbie: Yeah, she would have had to been if you didn’t get an infection. That’s amazing!
Talon: Just doing all the dressings and stuff.
Abbie: Keeping it dry in the shower.
Talon: Yeah, so that was always the biggest thing is keeping it dry. So, we would use Tegaderms, and she learned that if you clean the area really good first and then you put multiple layers of Tegaderms, you could get little pockets. And I would just pay attention to when the water got into it.
Abbie: And then you could peel that layer off.
Talon: Well, she would actually just push the water out and then like dry it and put a new one over it so if it broke back, in you could just feel it.
Abbie: Yeah, so you can see it.
Talon: Yeah, so I could swim. I love swimming. I grew up on a lake, and she would just let me go in all the time. She’s like, just be careful.
Abbie: Your mom’s a fearless one.
Talon: Well, it was one of those things, like if you screw it up, you won’t have this privilege again.
Abbie: Now what product is this?
Talon: This is Advate. I’ve never had any issues with it. It’s great; it’s really easy; it’s all self-contained now. One of my little tricks is, I’ll get the line and I’ll straighten it out so that it won’t get any kinks when I take my medication. Because, often, the line will roll once you stick it in because you only have one hand. And if you don’t want to use tape, then you have to make sure that it’s straight.
Abbie: And tape is tough on your skin and your hair.
Talon: Also, once you lay it down, you can’t move. So, it becomes a big pain. So, I will prime the line and get it all ready. Get some factor in there, tighten my tourniquet. I use my mouth to hold this, because if I set it down and then remove it, you can often lose the vein. So, stick it in straight, and then I’ll make sure I have the vein, just draw back a
little bit and then just push it back in. And then, I’ll just push it slowly in. I’ve already done it today so there’s no need for me to push it back in all the way. So, I’m just gonna pull it out. I never really tighten this very tight at all.
Abbie: It’s just enough to get the pressure up so you can vein?
Talon: Yep.
Abbie: I’m really impressed you learned how to do that with your left hand. I never thought about that. That was a really good idea.
Talon: Well, I broke my arm when I was younger, so that had a lot to do with it. And my mom’s like, you already have some of the skills, so you should learn how to do it with your left hand. Also, you never know what’s going to happen. If you have a bleed in your right or a bleed in your left, you have to be able to do it in both.
Abbie: She’s right. I literally had not thought of that. So, thank you so much for doing this. My last question for you is: If you could talk to hemophilia patients or children now, what would your advice be?
Talon: Don’t be scared, you know. It’s come a long way. Use your reps for as much as you need. If you have questions, they can reach out and get you help. Be diligent in caring for yourself, whether it’s taking notes or just listening to your body so to speak. You know, if an area is warmer than the other, then it might be a bleed, so treat it like a bleed and be preventative.
Abbie: I was going to say one of the big things I always go over with patients when I first start talking to them or they’re newly diagnosed is you need to be your advocate. You need to learn everything you can about your disease, and you need to learn to advocate for yourself. A lot of times people are scared to tell a doctor no or say that I don’t agree with you or can we try a different protocol.
Talon: Yeah, that’s actually key because if you don’t feel comfortable with your doctor, there’s something wrong there. You need to be able to trust them, and they need to listen to you.
Abbie: And you need to be not afraid to change doctors if you need to. The last person I was just talking to about that, I said even if they’re a good doctor and even if their protocol is OK, if you guys don’t mesh and you can’t talk and you can’t work through your treatment plan together, you need to find another doctor. You know, there has to be that connection there.
Talon: Yeah, I was fortunate enough to find a doctor that changed my life and how to deal with hemophilia. He was like definitely a mentor to me.
Abbie: That’s wonderful. Well, Talon, I want to thank you again so much for being here today and sharing your story and your experience, and to let you know it just was incredible listening to you speak earlier. You’re probably really inspirational for the kids you work with.
Talon: Yeah, I love doing it. One of my biggest passions is helping others, especially those with hemophilia, and how to learn how to deal with their condition. Because I want them to be just like everybody else, you know.
Abbie: Yep, it’s great, and good luck with the camp. Are you going to leave your film work or your production work you do to do that, or kind of try and meld the two together?
Talon: I’m going try to meld the two together. Camp is a full-time thing, but you know, when you’re not working, you have time to do it.
Abbie: It would be great to do a documentary on the camp about the kids and stuff. I’ve never heard of it, and I’ve heard of a lot about camps.
Talon: Yeah, definitely check it out.
Abbie: I will.
Talon: It’s called Dream Street Foundation.
Abbie: I could not remember. So, thank you so much.
Talon: You’re very welcome. Thanks for having me.
Abbie: You’re welcome.
Abbie: Listeners, thank you again for joining us today. Additional information regarding this podcast can be found on our website at www.bstquarterly.com.
We encourage our listeners to seek more information if they’re interested in Talon’s Dream Street Foundation that provides camping programs for children and young adults with cancer and chronic and life-threatening illnesses. The camping programs give children the opportunity to enjoy activities they would normally be restricted from due to their illness while supporting their medical needs.
If you have a question that we haven’t addressed, please feel free to contact us at [email protected].
Look for the next BioSupply Trends Quarterly Podcast announcement on our website for the opportunity to submit your questions.
The BioSupply Trends Quarterly Podcast is a copywritten production of BioSupply Trends Quarterly magazine, a publication of FFF Enterprises, Inc., the nation’s most
trusted distributor of plasma products, vaccines and critical care biopharmaceuticals.