Brett—On being a golfer, coach, and managing his hemophilia A
When did you find out you had hemophilia A?
My parents had me tested right after I was born because my cousin had it. From that moment on, they treated me with kid gloves. They watched over me carefully for signs that I might be bleeding, but I didn’t need my first factor VIII infusion until later when our family got into a car accident. Although no one was injured, my parents took me to a children’s hospital to get checked out as a precautionary measure and to have an infusion. What a lasting impression that hospital has had on us. Even after all this time, I’m still treated at the same hemophilia treatment center. I’m very happy with my doctor and treatment team because they take the time to listen, they treat me like a partner in my health, and they’re on top of treatments and the latest research.
What was growing up with hemophilia A like for you?
I was a kid who always wanted to do the things that I couldn’t or shouldn’t do and...I confess, I was a little pistol. Very headstrong. Whenever I faced an obstacle, I was bound and determined to use my resources to figure out a possible solution.
At the age of eight, after my parents and I talked to my doctor and he gave me the okay, I took up golf. That being said, certain activities, including golf, aren’t for everyone with hemophilia A, which is why you should always talk to your doctor. My doctor told us that if anyone even suspected that I might be injured from playing golf, I should call him or go to a treatment center immediately for care. By the age of 18, I had won six Junior League Golf tournaments. I got to play all over the world, and I met some great people in the process. Over those important childhood years, I attended a hemophilia camp where I learned to self-infuse–which gave me a sense of independence.
“I like the simple dosing schedule of infusing on the same days every week, twice a week.”1
What has your hemophilia A treatment journey been like?
About three years ago, I was recruited to coach a softball team for my company. My doctor gave me his permission first of course, and he reminded me that I needed to be cautious. But I was noticing that I was having a lot of bleeds, so I discussed it with my doctor again, and he recommended that I switch from on-demand, to prophy treatment. Always consult with your doctor to determine which treatment regimen is right for you.
I had fewer bleeds, which showed that my doctor and I had made the right decision for me regarding my treatment plan. I also tracked my bleeds through an app on my smart phone. Yes, there’s an app for that.
How did you find out about ADYNOVATE® [Antihemophilic Factor (Recombinant), PEGylated]?
I strive for zero bleeds, so my doctor called me to talk about ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated]. After discussing the benefits and risks, including the common side effects of headache and nausea and other potential reactions, he thought it would be a good option for me because of the extended half-life and twice-weekly dosing schedule.1 So I was really interested and wanted to hear more because I trust in Shire, based on previous knowledge and experiences. Since I have been on ADYNOVATE, I have not had a bleed.
I like the simple dosing schedule of infusing on the same days every week, twice a week.1 For me, my doctor prescribed that I take ADYNOVATE on Mondays and Thursdays and continue to see him on a regular basis. I like infusing in the morning, because that’s how I like to start my day. There are days, though, when trying to get to work on time with our rambunctious kids, God love ‘em, is a little uh…hectic…I try to set aside 10 minutes to mix and infuse.
“Since I have been on ADYNOVATE, I have not had a bleed.”
What is your support system like?
My parents raised me to be self-reliant and proactive about my health, which prepared me to always try to take good care of myself. Now, my wife, Landi, and I live in Florida with our two children, seven-year-old Landen and four-year-old Delani. So now I feel I owe it to them, too, to take care of myself.
One of the things I really like about Shire is the assistance and support services I’ve received through their Hematology Support program. Also, because I was eligible, I have received co-pay assistance, which I really appreciate.
“I strive for zero bleeds, so my doctor called me to talk about ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated]. After discussing the benefits and risks, including the common side effects of headache and nausea and other potential reactions, he thought it would be a good option for me.”1