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Living life is what inspires us. Check out our stories and get inspired, too.
“Once you start realizing how you want to live your life and what empowers you and what makes you happy, everything else kinda works itself out.
I definitely like to do things that are new and put myself out of the comfort zone, because hemophilia just kinda puts you out of your comfort zone to begin with.” — Dylan
DYLAN VO: Cool. Um, so this one is called "Radio Killer."
You know, I really want to build something that people can watch or listen to or see and feel that makes them feel good but also pushes the way they're thinking.
Like hemophilia, I can't change, and it teaches you a lot of accepting, just accepting that it doesn't matter, I guess, how hard your life is. It's up to you to kind of take the steps forward.
Hey, I'm Dylan Young. I'm from Chicago, Illinois. And what inspires me is making music.
Hemophilia B patient
I just got an acting degree, and I'm playing music since I was six, I've been playing piano, and I picked up guitar and some other instruments. So I definitely say the music scene really, really inspires me.
Oh, my creative process [laughs] is very sporadic. I tend to just go with whatever is kind of coming to mind. I tend to write some of the lyrics before, which is kind of interesting.
Maybe I'll get like a certain chord progression in my head, a certain, like, feel, maybe it's from drums or something, or literally just from what someone says, and then I'll usually like write all the words down I have at that moment like on my iPhone, like just in the moment, and then I'll start working on guitar first and try to get the chords down, just so I know the whole palette I'm working with at that point.
I think sound, just like certain riffs and certain phrases of sound can put across a certain feeling better than words sometimes. It's finding those sounds, which help, just, they kind of help the words move, you know?
Like sound, it could be anything. You know, water, like the sounds of water. The sounds of like, pots, like just banging on pots, the different like, frequencies and things you can make.
It's cool because you can like feel it as well as hear it. And that's what you really have to do, you have to write your story and put it into a context in order to get the values and the themes that you're trying to express.
So it's just like language, you know. You have to have language to express your needs. And so that's what I tend to do, just kind of create a story of, this happened here and so this is why you should or shouldn't do this.
Having hemophilia has really humbled me. I like to think of what my life would be without hemophilia, and I don't always think I'd be as nice of a person, as giving as a person.
And really, I think having hemophilia really has shown me that there's things you can't control and there's things you just have to go with the flow with. And that's something a lot of people forget, that you're not necessarily in control of your life all the time.
A lot of times, you don't always, you don't have friends with hemophilia all the time, it takes your effort to maybe go to a chapter event or to go meet people. Like camp is a really good way to do that.
I think it all comes down to friendship, you know, just having other people that you can relate to, that understand what you've gone through. And you don't have to explain anything to them. And they're all in the same boat, they all want to hang out with people who have the same, who have gone through the same things with them.
You just have to create the community for yourself sometimes.
I tend to live my, I guess like now adult years with doing something I'm kinda scared of every day, whether it's doing something like this, you know, getting interviewed, talking with new people. I tend to do that with the jobs I do. Like trying to put myself in positions where I feel a little bit uncomfortable, but it's a good uncomfortable, and I know after I'm gonna feel great, because I've done something new.
And so I definitely tend to like to do things that are new and put myself out of the comfort zone, because, I mean, hemophilia just kinda puts you out of your comfort zone to begin with. So once you kind of become attuned to that, it's a—it's a fun ride to kinda go on.
I would say stick through it, but I mean, you have to stick through it, just because it's kind of your life. But the faster you can accept it, the easier your life will be in the long run. The more you work at working with it instead of avoiding it or trying to control it, that's when you'll be the happiest.
What I, what I think that really pushes me forward is just getting a little more clever every day, just seeing what I can do better.
If once you do it, the next day it'll be easier, and you just gotta keep up with that process of doing something that's kind of hard and knowing that the next day it's gonna be easier, and that's why I'm doing it today, is to get to that point to where it's going to be easier. You're building momentum, is the way I like to think about it.
TITLE CARD: How'd you get into theater?
I first got involved by seeing shows. I remember being, I think I was nine or ten at the time, and we saw some show, maybe it was like Cinderella or something like that, on a field trip. And I told my teachers, I said next time we see a show in this theater, I'm gonna be on that stage, and next year I was in The King and I, onstage with all of those other kids, because I knew that's something that I wanted to do. And uh, it does--It was something that was different than, you know, sports or something that I could get hurt doing.
And I think that's kind of why I got into theater, because you can have really complicated characters who speak eloquently and show what they've gone through.
Thinking of my childhood, there's a lot of just like security around, there was just a lot of security around me. And I wish it wasn't as much as that, because it's harder to be independent now. But now that I've kinda found that independence and have started doing things for myself, that's what makes me appreciate how I was raised, you know? And appreciate that you have parents who don't really know what to do at that point, you know?
You really have to understand that things are gonna happen that you have no idea what to do with.
And I think that's something that I learned to cope with is, like the whole letting go thing. You've kinda gotta let it go and just take what life gives you.
My creative process, I built from some techniques I learned in college. All about creating an environment.
It could be, like I'll open my balcony window sometimes, I have a little like railing in my room, and there's a train that goes by. Or maybe it's raining or something like that. So I'll just take the little microphone I have and record that for a second, and that, that inspires me, just simple things like that, because it creates an environment of where I'm at and what I've experienced.
I have so much respect for my parents, just for having to change their whole lifestyle around mine, just because of what I was born with.
I think my parents really set me up to succeed, but the stuff that happened in my early childhood really still sticks with me though, which is really good, because I can always go back to that and know how hard it was for me and how, how much people don't understand your struggle all the time.
So, yeah, it was hard, but it was also something that I can bring to the table now and really, really digest it and put it out for the good now.
You know, if I would have never been bold and taken the opportunities that were given to me, then I wouldn't be where I'm at right now.
I think everyone should have a positive outlook. It's basically just doing those two or three things that really work for you and that inspire you, that keep pushing you forward, and it makes you have a better day when you do that too.
You've gotta, if you work on yourself, everything in your world tends to look a little brighter in the end.
SINGS: I am with you, wherever you go. I am with you, wherever you go. I am with you.
Please read below for Indications and Detailed Important Risk Information for RIXUBIS. See full Prescribing Information.
RIXUBIS is an injectable medicine used to replace clotting factor IX that is missing in adults and children with hemophilia B (also called congenital factor IX deficiency or Christmas disease).
RIXUBIS is used to control and prevent bleeding in people with hemophilia B. Your healthcare provider may give you RIXUBIS when you have surgery. RIXUBIS can reduce the number of bleeding episodes when used regularly (prophylaxis).
You should not use RIXUBIS if you are allergic to hamsters or any ingredients in RIXUBIS.
You should tell your healthcare provider if you have or have had any medical problems, take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements or herbal remedies, have any allergies, including allergies to hamsters, are nursing, are pregnant or planning to become pregnant, or have been told that you have inhibitors to factor IX.
Allergic reactions have been reported with RIXUBIS. Call your healthcare provider or get emergency treatment right away if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea, or fainting.
Your body may form inhibitors to factor IX. An inhibitor is part of the body's defense system. If you form inhibitors, it may stop RIXUBIS from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for development of inhibitors to factor IX.
If you have risk factors for developing blood clots, the use of factor IX products may increase the risk of abnormal blood clots.
Common side effects that have been reported with RIXUBIS include: unusual taste in the mouth, limb pain, and atypical blood test results.
Call your healthcare provider right away about any side effects that bother you or if your bleeding does not stop after taking RIXUBIS.
Please see RIXUBIS full Prescribing Information.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
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