Healthcare IT analyst, TX
Find inspirational stories from hemophilia B
patients in the B the Inspiration series.
Staying active is so important, especially for people who need to keep muscles around joints strong because of joint issues.”
Tell us a little about yourself.
My name is Elliot. I’m 31 years old, engaged to be married, and live in Austin, Texas, which is where I am from. My parents, my older brother, and younger sister still live in Austin. Recently, my sister had a little boy who was diagnosed with Hemophilia B. I look forward to being a resource for him as he grows up.
I currently work and support a Patient Portal and EMR for a Healthcare Organization in Austin.
When were you diagnosed with hemophilia B?
I was diagnosed with hemophilia B when I was about 2 years old. I bit my tongue, and it didn’t stop bleeding. The doctors knew to check for hemophilia right away because my mom’s brother, my uncle, has hemophilia B.
My older brother does not have hemophilia, and I was sometimes a little jealous of him. I felt it was unfair that I had hemophilia B and he did not, but he was always very supportive. As I grew up, I learned to play the cards I was dealt.
What was growing up with hemophilia B like for you?
My parents did not put restrictions on my activities, which had some good and some bad points. I was able to play with other kids and test my limits, but some activities did lead to injuries and bleeds.
In school, I was put in a library class and not allowed to participate in physical education or contact sports, which can be challenging growing up in Texas where football is a big deal.
Basketball was very tempting because I’ve always been a tall guy, but I learned very quickly that playing competitive basketball was not worth the risks. It was challenging, but I found other ways to make myself part of the social scene by becoming an avid swimmer and finding my own, less intense activities to take part in.
I learned how to take charge of my hemophilia through the Hemophilia Treatment Center, or HTC; attending Hemophilia Camp; and talking with my parents and my uncle Andy about hemophilia. Eventually, managing my hemophilia became a way of life instead of a burden. Much like people with diabetes have to take insulin shots, managing hemophilia just became part of my regimen and is something I have to do.
I went to hemophilia camp from the time I was 7 to 14 years old, and after that I became a counselor, so I got to see from both sides of the experience how important camp can be to kids growing up with hemophilia. Being around other kids dealing with the same things you have to deal with creates a comfort level and reassures you that you are not alone.
Camp was where I actually gained the confidence to do my own infusions. I was first exposed to doing my own infusions at my HTC, but I had a mental breakthrough at camp and started self-infusing when I was around 9 or 10 years old. Knowing I did not need to depend on others for infusions opened up a new sense of freedom that I didn’t have before.
How did you find out about RIXUBIS?
When I first heard there was an option available for hemophilia B treatment, it piqued my interest, and after discussing it with my doctor, I was eager to try it. My doctor started me on a prophylactic treatment regimen with RIXUBIS. I like that it works for me. I also like that it is recombinant and that the infusion volume is small and it doesn’t require a lot of extra packaging.
Because I work at a medical center, I happen to work just down the hall from my HTC. I have a pretty close relationship with them because of that physical proximity, but also with MyChart, which is a Web portal for patients. I can e-mail questions directly to my HTC team, and they can advise me on my regimen right then.
I don’t track my annual bleed rate myself, but before I started on prophylactic treatment I would have a bleed every other month; now bleeds are less frequent, but I still have bleeds, especially in my ankle, my elbow, and my knee. Any time I have a bleed, my HTC is always there, helping me along every step of the way. RICE is kind of my motto—rest, ice, compression, and elevation—and I always try to be careful and work with my HTC.
The concept of prophylaxis can be a challenge to grasp—especially infusing when there is no pain or bleeding. But having hemophilia can teach responsibility. You are accountable for managing your treatment, for not taking risks, for knowing when you need to say you can’t do something. In this way, hemophilia shapes you as an individual. I’d like to think it worked positively for me.
What do you do to stay healthy?
I try to stay as active as I can. I still participate in swimming and other low-impact sports, such as cycling. Cycling is great because it also gets me outside, and it can be like therapy because I can just focus on the ride and put work and things out of my mind.
Staying active is so important, especially for people who need to keep muscles around joints strong because of joint issues. My ankle doesn’t really permit hiking or running, but I have found I can enjoy sailing, kayaking, and yoga. Eating right also helps keep me feeling good. I think it’s important, if time permits and you have the means, to try to cook your own food for yourself. Cooking and not going out all the time helps me maintain a healthier diet.
Are you involved in the hemophilia community?
I work full-time, so I don’t have as much free time to be active in the hemophilia community as I would like to have, but I still attend local events, most recently a symposium. It reminds me what camp was like as a kid—you get to bond with similar folks and share experiences, which is very important. People with hemophilia B have different issues than people with hemophilia A, and vice versa.
There’s so much more focus on hemophilia A, which affects so many more people than hemophilia B. Hemophilia B tends to get less attention, and that creates challenges. We want our voices to be heard, just like everyone else.
Over the years, I have learned that taking charge of my hemophilia is something I simply need to do. I want to live. I do not feel that I have been shortchanged. I believe I can pursue many things, just with an extra layer of caution. Whether it’s personal relationships or getting a job or going to college, a busy and active life is totally attainable as long as a person has the perseverance to take charge in managing hemophilia.
Not all activities are appropriate for all people. Consult with your healthcare provider to determine which activities are appropriate for you.