College student, CT
Find inspirational stories from hemophilia B
patients in the B the Inspiration series.
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.”
Does your family have a history of hemophilia B?
There was no family history of hemophilia, so my diagnosis of hemophilia B was definitely a big surprise. I was diagnosed with Diamond-Blackfan anemia when I was born, so I was in the hospital a lot with iron deficiency and related complications.
When were you diagnosed?
When I was 2 years old, I slipped in the bathtub and hit my mouth. When it wouldn’t stop bleeding, the doctors decided to test for hemophilia. My parents told me that when I was diagnosed they began to go to church more often, but they weren’t overprotective, and I didn’t grow up sheltered or anything like that. I wore appropriate protective pads when I was playing.
What was growing up with hemophilia B like for you?
My parents met with the teachers and school administration when I first started kindergarten. My mom came to school with me to explain my condition to my teacher and the kids in my class. After that, I was on my own talking about hemophilia.
Then I was in school with the same kids until I went to high school, so everyone in my elementary school—both teachers and students—knew that I had hemophilia. I was always pretty open about telling people about my hemophilia because I was used to everybody already knowing.
Having hemophilia B didn’t seem to affect how classmates treated me, and I was never bullied, but everyone knew who I was. I grew up knowing that lots of people were always watching me. The teachers were especially worried about me and were afraid that if I got a small cut, it would be a big emergency, but I came to accept that as part of my life.
I wanted to play football when I was in school, so I decided to try out for the team as a kicker, thinking that would be a clever way that I could avoid the rough contact part of the sport, which I knew I could not do. I was disappointed to learn that the school football rules would not allow me to participate only as a kicker, which I guess is a good thing, since participating in football in any way is not recommended for people with hemophilia.
So the week the football team was having tryouts, I auditioned for the school play instead. I switched from sports to theater pretty much like that. I was always pretty interested in it, but once I started acting, I realized theater kept me active in the way I previously wanted to be with sports.
I did not miss more than a week of school a year. Only the most severe bleeds would make me miss school.
Tell us about your treatment journey.
After the hemophilia treatment staff taught my mom to infuse, she would infuse me at home when I had a bleed. When I was in high school, a nurse who came to our house began to teach me to self-infuse. I chickened out the first time, but 1 year later I learned how to do it.
Once I learned how to do infusions myself, I missed less school because I could keep factor at school. I could go to a conference room, do the infusion, and go back to class instead of having to leave school to go to the doctor’s office or wait for my mom to come home to do the infusion.
While being able to self-infuse allowed me to give the factor to treat the bleed, I still needed time to recover from the bleed. I love acting, but it can be strenuous, and having to act before I am fully recovered from a bleed can make recovery take longer. Recovery that would normally take a few days could last a week or two when I was acting. So when my doctor suggested prophylactic treatment, I was very interested in anything that might help reduce bleeds.
How did you find out about RIXUBIS?
My doctor suggested prophylactic treatment with RIXUBIS. I infuse twice a week and have a reminder on my phone.
I like RIXUBIS because it works for me and the volume is small. I have no problem preparing it. I used to have bleeds that were hard to control, but now I am having fewer bleeds since I began prophylactic treatment with RIXUBIS. That’s just my experience, though, and yours may be different.
What do you do to stay healthy?
Diet has a big impact on my well-being. I seem to be more likely to get hurt when I don’t eat a balanced diet to get the vitamins and iron I need. I try to eat healthy, stay active, and manage stress. I try to keep everything balanced. I bike and run for stamina and like shooting baskets. I don’t lift free weights because of my condition, but I do push-ups, abdominal workouts, and yoga. I stretch a lot to avoid injury and stretch before performing in acting classes.
There is a Hemophilia Treatment Center (HTC) in Connecticut that I can go to if I get hurt at school or need treatment for my anemia, but I prefer going home to see my doctors at my HTC in New Orleans, because I have a history with them. I try to go at least once a year. They ask about my bleeds and my activities. They do blood tests, especially to check my iron and anemia, and do joint mobility tests. I also see a social worker there and talk about school and relationships.
What is your support system like?
My entire family has been very involved in the hemophilia community; my dad was even president of the board for our hemophilia foundation. When I was a kid, I just liked going to the hemophilia community events and being a part of them. From the time I was 6 years old until I was about 13 or 14, I went to hemophilia camp almost every year. I loved camp. It was the one time kids with hemophilia could play around together, instead of being the odd ones out. Now that I’m older, I like having the opportunity to teach the younger kids about how I learned to manage hemophilia. I love getting to talk to people about hemophilia and plan on getting more involved once I’m out of school.
I’m not selective about who I tell about my hemophilia. Many people I meet have at least heard of the condition, and people tend to understand once I explain that it is a clotting problem.
When I talk to parents who have children with hemophilia, I let them know that having hemophilia is nothing to be ashamed of. I tell them that when I was a kid, hearing about hemophilia in a simple way helped me learn to embrace who I am without being defined by hemophilia. Parents who are worried about their kids with hemophilia seem to appreciate hearing me describe my experiences.
How did growing up with hemophilia B influence you as an adult?
Growing up at school, I felt like everyone was watching me, and that affected my personality, especially when I was very young. As I matured, I learned that having hemophilia does not need to keep me from living an active life. However, I sometimes worry that the liability of having a chronic condition may be a challenge for my career. Also, I have to always make sure people around me know about my condition and what to do to help me if needed.
When I was younger, I had a friend who had hemophilia A. I thought having hemophilia A provided him with more treatment options than I had. But now I am happy to have the option of a prophylactic treatment regimen for hemophilia B.
Hemophilia has taught me acceptance, compassion, and humility. We all go through hardships—some more serious than hemophilia, some less serious. I think learning to manage hemophilia has helped me become a better person.
Taking charge of hemophilia has become easier for me as I have gotten older, because I have gotten to know my own body and have learned what I can and can’t do.
In the future, I plan to put a lot of work into art and music, taking the discipline I’ve learned from acting. I want to see the world and learn what I can give to people.
Not all activities are appropriate for all people. Consult with your healthcare provider to determine which activities are appropriate for you.