Dylan—On learning from the past and building your own history
Does your family have a history of hemophilia A?
As far as I know, there’s no history of hemophilia A in my family. So, when I was eight months old, and my mom noticed I had huge bruises on my stomach, she rushed me to the doctor, who wasn’t in the office at that moment. She was going to take me to the emergency room, but the office assistant suggested we wait. She was afraid my mom might be accused of hurting me. It turns out, I’d been jumping up and down in one of those baby bouncers, which had caused me to bleed internally. That was the first sign of hemophilia A, and shortly afterwards, I was officially diagnosed with it. My mom worked in a medical lab, so she didn’t make a big deal over the fact I had hemophilia A; she later told me that she figured we would just deal with it. Her perspective was if she treated me like a regular kid, other people would, too, and I’d have many opportunities in life.
What has your hemophilia A treatment journey been like?
Initially, I was treated on-demand at the clinic or the emergency room when I had a bleed. But then I began seeing a hemophilia specialist who talked to my mom about having me treated prophylactically. She agreed because I’d had numerous joint bleeds. To make the process easier for both of us, I had a port put in. It was easier for mom to give me the infusions through the port rather than playing “hit-or-miss” with my veins.
When I was 11 years old, I had the opportunity to travel to Canada as a student ambassador with an outside program. My mom told me that unless I could self-infuse my factor, I would not be allowed to go, so I agreed to learn. A nurse came to my house two or three times a week to teach me how to infuse until I felt completely comfortable with the process. I was in Canada for 10 days, and I needed to infuse on schedule. On the day I was to take my last dose, I decided to skip my dose because I just didn’t want to be bothered, and you guessed it…I had a bleed. Luckily, chaperones knew how to help me because my mom had gone over everything with them beforehand. I was taken by ambulance to a children’s hospital about an hour away from where we were camping. If there’s an upside to the story, it’s that I got to sleep in a nice comfy bed, watch TV, and eat pizza while my classmates slept on the ground in a teepee, but that incident was a real turning point for me. I realized that because of my decision to skip my dose, I really suffered the consequences. The following year, I had the port removed, and while my mom really wanted me to have another port placed, I told her that I would rather self-infuse without it, and she reluctantly agreed.
What has growing up with hemophilia A been like for you?
My mom always treated me like any other kid, and when it was time for me to start kindergarten, she specifically told my teachers not to treat me differently just because of my hemophilia. I think she may have freaked them out because, despite my mom’s request, my classmates were told to be very careful around me. When Mom found out, she spoke with the teachers, again, and they agreed to call her whenever they had any concern—which meant her phone rang whenever I got even the tiniest paper cut.
Growing up with hemophilia A was frustrating at times. I would get very irritated having to stop whatever I was doing to get infused, and there were certain activities I couldn’t do because of the risk of having a bleed. But, after discussion with and approval from my doctor, I have been able to enjoy many activities, such as cross-country.*
*Not all activities are appropriate for every individual. Please consult your HCP to determine what activities are right for you.
How did you find out about ADYNOVATE® [Antihemophilic Factor (Recombinant), PEGylated]?
My mom and I talked to my doctor about ADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated]. He told us that ADYNOVATE is approved for patients with hemophilia A. He informed us that ADYNOVATE is an injectable medicine that is used to help treat and control bleeding in children and adults with hemophilia A and that ADYNOVATE can reduce the number of bleeding episodes when used regularly (prophylaxis). He also told us that it shouldn't be used if you're allergic to mouse of hamster protein or allergic to any ingredients in ADYNOVATE or ADVATE [Antihemophilic Factor (Recombinant)].1 He also discussed the safety information. He told us the common side effects of ADYNOVATE are headache and nausea.1 My mom and I decided to try ADYNOVATE because I’m striving for zero bleeds. I’m in charge of my treatment regimen, and infusing twice a week works well with my schedule.1 Since I have been on ADYNOVATE I haven’t had any bleeds. Please keep in mind, though, that this is just my personal experience; yours may be different. That’s why it’s important to talk to your doctor to see if it’s right for you.
“My mom and I decided to try ADYNOVATE because I'm striving for zero bleeds.”
What are your plans for the future?
One of my greatest passions is learning. Whether it’s a new language, watching the news, or delving into history, it’s really what makes me tick. But I’ve discovered, even at my young age, that the hardest lessons are sometimes the ones that shape our lives. And yes, I speak from experience.
I’m especially interested in early 20th-century U.S. history. A lot was changing in the world back then. I like what Teddy Roosevelt said: “Speak softly and carry a big stick—you will go far.” I can relate to him on a couple of levels. Despite his health problems he was able to achieve great things, and like him, I hope one day to have a career in politics. Or neuroscience… or economics… it's kind of too early to tell, but I do plan on speaking softly and carrying a big stick!
“To paraphrase a line from Teddy Roosevelt, I’m going to continue to ‘Speak softly, and continue to stick—as prescribed, and on schedule.’ ”
Today, I’m looking forward to going to college and maybe someday traveling the world. In fact, I’m preparing for the future now by learning various languages, like German and Portuguese. And to paraphrase a line from Teddy Roosevelt, I’m going to continue to “Speak softly, and continue to stick—as prescribed, and on schedule.”