Barrin–On how growing up with hemophilia A made him a stronger person
When did you find out you had hemophilia A?
I was diagnosed at nine months old after my mother noticed bruising on my stomach and waist when she’d take me out of my baby walker. I’ve been told that my hemophilia A was caused by a spontaneous gene mutation, but I came to find out that my father and an uncle both had mild cases of hemophilia. They didn’t even know they had it until they tried to enlist in the U. S. Army. Needless to say, they weren’t allowed to join.
What was growing up with hemophilia A like for you?
It’s important to me to be a True ID speaker because when I was growing up in rural Alabama, I didn’t know another living soul who had hemophilia. It was pretty lonely, and I didn’t like to get involved in anything where I might possibly get hurt and have a bleed. So, I didn’t really play with the other kids my age, as much as I would have liked to. My classmates couldn’t understand why I’d show up on crutches one day, and then a day or two later, I’d be walking okay. They told me I was faking and there was a certain amount of bullying involved. There were times when I thought I was the only person in the world with hemophilia A, and I was frequently in a dark place because of this. I think a lot of kids with bleeding disorders aren’t as active as they could be because they’re afraid of getting hurt. So, if hearing my story can inspire just one person to have the courage to take control of their hemophilia and get out there, what I’ve been through will serve a purpose. Just remember that certain activities may not be right for everyone with hemophilia A, so you should always talk to your doctor first.
“If hearing my story can inspire just one person to have the courage to take control of their hemophilia and get out there, what I’ve been through will serve a purpose.”
When did you start meeting other people with bleeding disorders?
I began going to hemophilia camp in the summer, and that helped my self-esteem quite a bit. I learned to self-infuse when I was 11 or 12, and that was a big milestone. I was able to treat myself without having to rely on my mom, or a healthcare professional. It was also the first step on my road to independence. But, you should be trained by your hemophilia treatment center or your healthcare provider before you self-infuse. Years later, when I went off to college, I met a group of people who accepted me for who I am, and they seemed to understand what hemophilia was all about. As it turned out, during junior year, my roommate also had hemophilia. So, I actually wasn’t the only person at that college with a bleeding disorder!
How did you find out about ADYNOVATE® [Antihemophilic Factor (Recombinant), PEGylated]?
Not too long ago, a Shire territory business manager told me about ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated]. At my next appointment, my doctor and I discussed ADYNOVATE and its twice-weekly dosing regimen and the fact that if used regularly, it may reduce the number of bleeds I’d been experiencing. He also explained that ADYNOVATE is used on-demand to control bleeding in patients with hemophilia A. We also talked about the potential side effects such as headaches and nausea. He told me ADYNOVATE was not for people who are allergic to mice or hamster protein, or who are allergic to any ingredients in ADYNOVATE or ADVATE® [Antihemophilic Factor (Recombinant)]1. I agreed to give it a try. I was impressed with how effective ADYNOVATE was–and still is–for me.
I have been on ADYNOVATE and so far I’ve had one bleed. My doctor and I are happy with how I’ve responded to ADYNOVATE. But, keep in mind that this is my personal experience; you might have a different experience. That’s why you should talk to your doctor to see if ADYNOVATE is right for you. And when you have that talk, make sure to ask any questions you have about the product’s safety and efficacy, your treatment plan, and getting infusion training if you need it.
I’ve had a lot of product support from Shire, but I’m very self-sufficient. Also, because I was eligible, I have received co-pay assistance from Shire, which is a big help. The Territory Business Manager (TBM) will call to see if I have any questions about ADYNOVATE.
What kind of advice do you give other hemophilia A patients?
If you’re living with hemophilia A, I encourage you to take good care of yourself. You are the only one who is in charge of your life, and you have to make good decisions for yourself. Talk to your doctor. Get with the folks at your hemophilia treatment center. Get involved with the hemophilia community. I’ve worked hard throughout my life to do the best that I can for myself, and not only am I glad I did, my children are also glad I can be involved in their lives.