How to Become a Self-Learner: Life Experience From Jorge de la Riva

We explore how to become a self-learner in hemophilia, from adherence and refills to evaluating factor, non-factor, and gene therapies. Jorge shares candid lessons on transition to adulthood, community support, and choosing treatments that fit real life.

• Why ownership of care decisions matters
• Adherence as daily practice and mindset
• Planning refills and emergency doses with pharmacy
• Signals it may be time to review medication
• Comparing standard, extended, non-factor and gene therapy
• Using lifestyle fit as a decision lens
• Learning at chapter and national events
• Guidance and hope for newly diagnosed families
• Building a comprehensive support network

Be part of the conversation at Emerging Therapies, February 24–25. Register now at hopeforhemophilia.org/emerging-therapies

Transcript

Welcome And Purpose

Speaker 0:01

Welcome to the Hope Podcast. My name is Jonathan James, and it is great to see you today. Thanks so much for joining me for a few minutes to talk about what I think is an important topic about being a self-learner. You know, it's so important that we educate ourselves as people living with bleeding disorders on what it means to be able to understand a wide array of product choices, things that we need to understand about medication, about physicians, about things. And most of us were not trained for this. We were trained by this. And so today I want to talk a little bit about what it means to be a self-learner and how to be able to prepare yourself for important decisions that you have to make with your doctor and shared decision making. And today I've invited a friend of mine to join me in this conversation that I think will be a really great opportunity for us to talk a little bit more, Jorge De la Riva. And Jorge, it is great to see you. Thank you so much for joining me on the Hope podcast today.

Speaker 1 0:58

Thanks, Jonathan. Happy to be here.

Speaker 1:01

Well, I'm excited to dive right into this conversation because you and I have uh known each other for a long time and uh trying to remember just recently how long ago, it was probably a decade ago when we first had had an opportunity to sit down and share a meal together. But uh you have been through a long line of uh a lifeline, really, uh a lifetime of making decisions and learning and growing and dealing with hemophilia along the way and some ups and downs and all kinds of stuff. But for people who don't know you as well as I do, why don't you take just a minute to introduce yourself and tell us how you're affected by a blaming sword and where you live?

Speaker 1 1:33

Yeah, thanks. Um happy to always talk about you know my experiences. I have uh hemophilia a severe. Um, so this has always been something top of mind for me. Uh, I'm lucky to have kind of shared the spotlight. My mom's been the executive director, used to be uh in Texas. So definitely uh was absorbed in the community and got to have a lot of great roots. And now I'm really thankful to serve on the board for the uh Lone Star Bleeding Disorders Foundation, um, sharing in uh, you know, any way that uh I can help be of service and always happy to discuss with anyone in the bleeding disorder or outside of our community about uh what we go through.

Taking Ownership Of Treatment Choices

Speaker 2:10

That's awesome. Well, you've been uh an incredible advocate and a great example of what it means to be a part of the community, be invested with the community. You've been involved in it at every level since you were little, and uh I love to hear that you're giving back today. That's just just an incredible uh way to serve your community. I I want to talk specifically. We we have this event coming up called Emerging Therapies. And one of the conversations that we're talking about is really taking ownership, right? Of learning about your bleeding disorder, but also about the therapies that you have to take and the decisions you have to make along the way. And I just think that it's important for us to be able to uh to be able to learn from each other and also to kind of acknowledge what it takes to be uh able to continually improve along the way. And so tell me a little bit about your journey and and and how you've approached being a self-learner and learning about medications and things along the journey.

Adherence Wins And Transition To Adulthood

Speaker 1 3:03

Yeah, definitely been a nice journey over 30 years here, um, starting from on demand um before prophylaxis was you know given as the status quo. Um I've been on short-term factor replacements pretty much my whole life, doing the whole treadmill of, you know, every few days being fortunate that there's always something to recover for. Um that's always just been, you know, a really great thing to go back to. There is something always there to you know make you feel better. Um for me, I thought it was interesting that you were talking about how do we learn from each other because it's it's it's not something you can always just find someone to get a lot of experience for. You really have to lean on your daily treatments or or you know, wherever getting to get a little bit of both about um my treatment center has always given me excellent advice about what they're seeing in other patients and some emerging factors. Um now in 2026 we have more options than ever. Um now is actually the I I I didn't actually think there was as much of an option as before. For someone who is uh uh who has to take prophylaxis quite regularly when I was um younger every every few days, every other day, every third day. Um, if you stick to it, then you're gonna be great. You could there are a lot of different options for you to look at. Um, and so then where something before I would more just be talking with the treatment center, now it's also talking about it in like a lifestyle way for me personally. I'm going and I'm talking with some people that you know maybe uh have different treatment protocols and saying, well, how does that work for you? Not just from like actually staying with it, but how has that affected you in a long term? Um, I mentioned my age just because at 30, I'm getting to see some of the culmination of the therapies that have been um and my decisions about how I use them and and how I keep my factor levels um as high as possible. So it's really interesting to see now um just how other people's perspective in that same kind of age range right there.

Speaker 5:26

Yeah. You bring up a great point about age. I think one of the things that we, you know, think about a lot of times going making that shift from like where your parents are kind of leading the charts and doing a lot of the investigation and kind of making decisions about what product you're on to the point where you have to decide for yourself, that's a huge hurdle, right? I mean, uh that that's a big transition point. And I think a lot of times people are like, well, he's 18 now, he's got to decide, you know. But I mean, if we're being honest, I mean, like, I don't think I was probably 30, you know, I was probably your age before I started even thinking about really taking ownership of it, you know. So, like, how is that transition for you going through that? I mean, you were kind of uh an exception to the rule because your parents were so deeply involved in the community. But, you know, how how has that been for you in terms of just making that transition from them kind of making those decisions to you having to to dive in and make some of those decisions for yourself?

Logistics, Refills, And Emergency Doses

Speaker 1 6:23

Yeah, for for me, it's just been um is the adherence. When I was in closer in my you know, transition years 16 to young 20s, um, that's the time where, you know, as a lifestyle and as a young person, definitely tested more boundaries and like saw, okay, you know, what if I'm missing a day? And just the realities of life. And, you know, growing up, you kind of are, if you have always been, you know, very on the dots, there might be times in your life during like during those years that um I know for me personally, I you know explored um, you know, what might those other situations look like. Now I've come back to seeing um definitely adhering to it as titos as life will allow you um leads to the best outcomes for me. But um yeah, outside of um exploring different um treatment options, it would be how you adhere to it. I think it's been the biggest transition that I um have felt so far.

Speaker 7:29

Yeah, and just to be clear, I mean, look, this is a no-judgment zone. So I I know that for me, I went through a transition where I was like, I don't really need this anymore. I'm just gonna skip a few doses and see what goes on. But that's that's that's a problem for pretty much all of us, right? I mean, when you're trying to take ownership, I think it's very common for people to go and say, you know, I don't really need it. And then much later realize, oh my gosh, that was the dumbest decision. I should have just stuck to my treatment. And now you become more disciplined in life. And so those ebbs and flows really matter, don't they?

When To Reevaluate Medications

Speaker 1 8:01

Yeah. And it's not just in the adherence directly with infusing it either. Um, other areas that I've um, you know, had some problems before is in the the ordering of factor. And, you know, you may not account for those emergencies always. I've definitely been in those situations, probably they they seem embarrassing now. It's like, how can you forget to keep you know a proper backdose amount? But it it's a lot to um to handle. And sometimes, depending on how much you're being given, these windows can really kind of sneak up on you. And so not just infusing it literally, but also how to keep emergency dosing um for the emergencies that you know, just sometimes you you never see them quite coming um at what you'll need. That that part actually in the last few years um has come up to me and and it's made me reevaluate about um how I'm storing this and and and discussing with my specialty pharmacy um and saying, hey, this is the reality of of life for me. Um, we're gonna need to make sure that we do something to account for this and plan for this. And and thankfully that that has gone very well and I've been able to plan around that.

Speaker 9:17

It's so true. And you know, this isn't really part of our topic today, but I do think it brings up a great point is that, you know, patients having choice for all of us to be able to have the ability to choose the best provider and the best specialty pharmacy is so people don't understand. This is not about uh preference, it's not about um convenience. I think that sometimes gets lost in that conversation. This is about really necessity, right? Because if you get, we don't get a bunch of extra doses, it's not like we get a bunch of PRN doses every month and then we can just like float it for a week or two. I mean, if you or maybe a couple of doses depending upon your cycle or your or your your preventative treatment plan, but it's like you've got if you miss a little bit, like you know, one day turns into a week, turns into three weeks, and you could be many weeks be behind on your treatment plan, which could cause a joint bleed, it could cause even permanent damage if you're not careful, right?

Speaker 1 10:17

Yeah, that's definitely something um that I'm thinking about. I mean, shipping things takes a while, and sometimes that's that can be an everyday thing. It's not something you can go find at a CDS. Um, so it's really something you have to be thinking about. Yeah, exactly how you said it.

From Factor To Novel And Gene Therapies

Speaker 10:32

Yeah. It's so important. I I um yeah, I think about that. So let me let's talk a little bit more about um your discovery of the medication itself. Have you ever found yourself in a situation where you thought, this isn't working as good as I it thought it once was, or I tried it, it didn't, it didn't go as well as I'd hoped. Like, what are those trigger points for you that you've had to really think about that made you start wondering, should you try a different medication or talk to your doctor about maybe maybe making a change?

Speaker 1 11:07

Yeah, those have been more recent in the last I'd say I experienced that anxiety about changing um as we've been given more access to products and and in those two spaces, um the the promises from from uh going to a different therapy are always great. Um but it kind of depends back to um what will my personal experience with it be? And how anxious am I gonna be in a given week? Um, because that's kind of the the cycle that I'm thinking of is in terms of weeks. It's how often do I have to think about either adhering to this or what my factor levels will be when I'm thinking about any other medication? And that's kind of what I personally have hung my hat on is the thing that works best for me is the one where I have to think about it the least. Um and so in in this era, I mean, this has always been the hemophilia treatment center for me and and and the staff there. Um but it's also been colleagues as well or friends, yeah, whatever you want to call everyone that you see. But absolutely um and I would say the before time where it's mainly talking, oh, it's even evolving to well, which which product can be the best as well. Um that's kind of added a new element, and you know, I'm thankful for that new element because that gives us another opportunity to live a life um without having to think about it as much.

Learning By Showing Up To Events

Speaker 12:50

Yeah. Well, you know, you bring up a great point too about like when you first started this journey, you were on a you know, uh short half-life or standard half-life, I guess. But um, you know, and then and then the the landscape has evolved quite a bit. I mean, you saw it go to extended half-life products and then now non-factor replacement. And then you also found, you know, now we're into like anti-thrombins, and there's all kinds of different approaches to how do we stop systematic bleeding in the clotting cascade. And I do think that um, you know, there's a lot of those approaches actually play a pretty interesting role into lifestyle, which I think is why we as patients need to be in the driver's seat. And uh, you know, one of the things that I find is interesting is, you know, I didn't start out, I wasn't the kind of person that was really that big of a science nerd. I didn't love science, it was not my favorite subject. I think recess was technically my favorite subject, but I wasn't one of those people that loved biology. And and of course, living in and out of the hospital so much as kids, you know, it's like that was kind of the last place I wanted to be. But I but I've had to learn as an adult, you know, that it's so important for us to put ourselves in the place of kind of throw ourselves in the deep end sometimes and learn some of these things. So I find myself going to educational events, chapter events, national meetings, trying to like throw myself in the deep end and listen to things that sometimes I don't fully understand or not completely, you know, something that I was uh filled asked. Yeah. So like do you find that you do that sometimes too? Like where you throw yourself in just so you can go, I hope I can learn something out of this. Maybe I'll maybe I'll get something that'll help me.

unknown 14:31

Yeah.

Reassurance For Newly Diagnosed Families

Speaker 1 14:32

Ever try to try to explain like what exactly is hemophilia uh to your friends? Uh and they're like, hey, okay, it's dominoes, but like what actually is like, okay, what's a pro you're missing a protein, but then there's a class cascade that's happening. I've heard that word before. Yeah. I I've still been trying to learn correctly. And I have to say, I mean, it's it's it's pretty complicated. Yeah. Um but yeah, I always have just tried. And especially when you're talking about like a new treatment, like learning um like with gene therapies, for instance, like that has from the first time that I heard about it, that like the concept of how it works, I'm like, wow, that's cool. Like, I really want to learn about how this works. I kind of get how the um the normal factor replacements have worked, where it's kind of like drinking a Gatorade and then or eating some food and you're you know kind of going through it little by little. Um, but the gene therapy one made me want to think, like, wow, I actually really want to like dig into how this goes. And then you learn about all these other areas. Yeah. Um, but yeah, I think it's super important. Um, I can't say that I always get it, but I always try. Um, and definitely my best resource for going to that is, and I know it can be uh it can be tough to get to sometimes, but going to events, I always feel better after because you'll sit with somebody and you'll be like, insane. Uh I'm in the same exact seat. And that's it's that's such a rare and beautiful moment. Um, it's the it's actually the thing that makes me most thankful to be part of a bleeding disorder community. It's what I say to every family that maybe just had a kid with hemophilia or with a bleeding disorder. How rare is it to thankfully have you know full protection, but also have this community that just really gets you at like your not not anxiety levels, but just it's it's a huge part of you. And um it's I don't see that in a lot of other people that aren't part of a special diseased community, yeah. Um that have people back them up as hard as outside of family, of course, maybe it's always there.

Speaker 16:46

Yeah, it's so true. Just the whole, the whole, you know, we really are so fortunate that we both have a uh community to rely on, other people to connect to. Um, you know, there's a lot of uh travel scholarships out there sometimes people can get to be able to go to these meetings. It's not just like, you know, how do you do that? But there's still other hurdles we have to always overcome, like missing work and things like that. But just, you know, I do feel like I I I couldn't agree more that there is, uh I always say it this way, that the best thing about being diagnosed with a bleeding sore is the community that comes along with it. And when we really can cherish those things, I feel like gratitude is a great starting point to help us to be able to get better and in in life and and to grow as individuals. And, you know, I I just think um that's something that that we can't take for granted and we need to celebrate. And if we do celebrate that, a lot of times we'll partake in it more and we'll benefit from it more. You never know. You it's you always say the best thing about those event moments is that it's the hallway conversations, right? It's the in-between, really not always just the presentation, but you learn something from the presentation too. And so it's kind of the culmination of all things and and uh and talking about that. And so I just I just can't help but think in our conversation today, too, about you know, there's probably some some parents out there that are listening to this for the first time and they're they're scratching for just any kind of you know answers. And they just found out that their, you know, son or daughter has a bleeding disorder and they're just devastated, you know, and and trying to, you know, learn as much as they can. You have just been a great example of somebody who's been, you know, uh raised and had parents that advocated fiercely for you and really worked hard to learn and understand as much as they could to put you on the right path. And of course, you've taken that ownership to a whole new level as you've started to, you know, sit in the driver's seat yourself. Is there any any words of wisdom or advice you'd give to maybe parents out there who are just really worried about their, you know, child and their journey and and being worried that they might not know how to navigate life?

The Power Of Comprehensive Support

Closing Thoughts And Event Invite

Speaker 1 18:57

Well, I I can say it from here in 20 pretty good. There can be some scary moments and things that we need to navigate, but that's life. That happens to everyone. Um I don't um I don't mean to be an overly positive person, but really as long as we are so fortunate to have the opportunities we have with the therapies that are here, and I realize that that in itself is something that I'm immensely grateful for. If you have those um opportunities, it couldn't be something that I'm I would I would feel worried about at all just because of my favorite memories for me are all of these connections I've gotten to me and how easy it is to make um locally, state, national, uh global. I mean, there is no world I would have had these same opportunities um that um that I wouldn't have. And so, you know, with with with what we've been able to accomplish so far, um, just in the like I mentioned, I kind of like looking at my life cycle because I started right before the prophylaxis. And I know that there's others older than me that would have said, well, I started right before recombinant factors. Um it just gives you a lot of perspective about it's not it's not as bad as it seems. Um if you just told someone like I can't clot. Um it's very, very manageable. And um, there's just been a lot of cool things that have happened over the over the years that um makes me makes me really proud to have a bleeding disorder. It's not something I hide ever. It's it's actually something that's usually kind of tip of the tongue. Um, and I talk about where I get to go and who I get to meet with. And um I get to connect with people with um other specialty um cases. Like I'm also involved with um with the diabetes group at work, go to some of their walks too. And it's just it's cool to be able to connect like that. Um, so I personally I think of it as one of the greatest strengths. Um, that has I don't know who what my perspective would be like without it. And I I see that really commonly um in between us, and that we're all able to have this and still, I mean, you know, sit around here and then take life the same step as anyone else.

Speaker 21:39

That's so true, that's so good. You know, I think it's important for for all of us to have that gratitude perspective. You said it about you you don't want to be the uh overly positive person, but I don't think we can be positive enough. I think it's important for us to have an optimistic outlook, and that's why I love hanging out with you, Jorge. Is you always have that optimistic. Point of view that I think is so important. And um I just really, you know, it doesn't mean that life doesn't have its hardships, but being together through the hardships matters. And I think that having a good support system, you know, is so important. It's it's more than just your physician, it's also the nurse care coordinator, it's also the social worker, it's also the full comprehensive visit at the HTC with your physical therapist, it's also your, you know, but it's also your friends at work. It's your, it's your family, it's your social network within the context of the bleeding disorders community. There's so many things that play into that that's so important. And I think in order to be a whole person, we need all of those things. And I um I really just appreciate your perspective in that sense. I appreciate your your willingness to be, you know, transparent and honest about uh when you've been on on track and when you haven't been on track, and also just learning how to just learning how to, you know, take baby steps and and throw yourself into the deep end when needed. And um, you know, you just you're such a great example of what it means to be somebody that that takes ownership of their circumstances and makes the decisions needed to be able to um, you know, continue to progress, right? I think you know perfection is an elusive goal. None of us will experience perfection, but progress is something that we can obtain, and that just takes those little decisions every day to keep getting back, keep keep keep giving back, keep getting into a place of gratitude so that we can be involved. And and uh you're a great example of that. And I really just appreciate you sharing your thoughts today and and uh look forward to many times in the future that we get a chance to be able to connect. And I uh just just glad to see it going well and hope to see that it continues to go that way. So thanks for joining me on the podcast today. Thanks for being a part of this conversation, and uh we'll look forward to seeing you in the next one soon.

Speaker 1 23:59

Awesome. Thank you so much.

Speaker 24:01

Thank you. Well, big, big thank you to Jorge for joining me for this uh interview. I hope that you got something out of that. I know I did, and it's so encouraging because there's so many things to think about as it as it pertains to just trying to understand how to be a self-learner and how to make certain that you can focus on it. Jorge's such a great example of somebody that's taken the reins, he's taken ownership of it and started to make those decisions for himself. And so I hope that you can join us for our Emerging Therapies online conference coming up right around the corner here in February 24th and 25th. You can register right on our website at hope-charities.org. You can learn a lot more about the sessions that are going on there and what's happening. We're going to have some of the most amazing speakers. We've got a great lineup of presenters who are going to be giving amazing information about all kinds of different medications and different things to think about. You can actually see more about these presenters on here, watch some of last year's sessions and get a flavor for what is going to be presented. This is not just about products themselves, but it's also about trials. It's about what's going on in the investigation side of things. It's a lot of information that I think will be helpful to you in your journey of living disorder.