After you were diagnosed with hemophilia A, your parents discovered a family history of the disease on your mom’s side. Can you share a bit about that?

I was diagnosed with severe hemophilia A at two days old. My parents weren’t aware of the family history at the time. My mother was from Wales, and my father was UK-born to a British mother and an American father. I have two cousins in Wales who also have hemophilia. I remember hearing my parents call that side of the family while I was growing up. They would talk about what we were all doing for treatment. At that point, the local hemophilia community was small and growing and we were looking for different avenues to connect with other families having dealt with hemophilia.

How did you handle your treatment while being active?

I got the port taken out when I was 12, and after being taught by my healthcare provider, I began doing my IV infusions. To this day, I have been very compliant with my treatments, which helps me stay active. I was able to play baseball with friends in high school and college. Although, certain activities, including baseball, aren't for everyone with hemophilia A. That’s why you should always talk to your doctor before starting a new activity. My doctor told us that if anyone even suspected that I might be injured from playing baseball, that I should call him or go to a treatment center immediately for care.

Has having hemophilia A influenced your approach to life?

There's kind of a mental toughness you get as a kid with hemophilia. I matured earlier mentally, getting infusions at a really young age and then eventually infusing myself. Other 12-year-olds didn’t have to hit their vein and get factor. It was not fun, but it became a piece of my character that made other parts of life feel relatively easy. I knew I could do what I needed to do because I’d done harder things managing hemophilia A.

How does your story of living with hemophilia begin?

My four brothers and I were born with hemophilia A. This bleeding disorder is woven through almost all areas of my life—even the parts I can't remember—which were told to me as I grew older. My first dose of factor VIII was administered in El Paso, Texas. I was told that I fell off of a tricycle when I was just old enough to be riding in the driveway. I hopped back on the tricycle as soon as I fell and started to pedal again. As I turned the trike around for another lap, my mother saw the drops of blood break through my curly hair and stain my white shirt.

How did your family take on hemophilia A?

I always knew I had to be cautious and was blessed to have a mother who was a nurse before marrying and having children. Given this knowledge, along with her experiences caring for her beloved baby brother, she never seemed fazed by the roller-coaster ride of raising five children living with hemophilia. She is my rock. She worked with our doctors to help make all our healthcare decisions for the family until we were old enough to make them for ourselves. For as long as I can remember, I’ve been on ADVATE for hemophilia A. It is a part of my life, just like my brothers and hemophilia.

How did your treatment journey unfold?

Unfortunately, all the support in the world could not alter my experience when I was dealing with bleeds, target joints, and premature arthritis. I appreciated having a family who understood what I was dealing with, but medicine, while improving, was not quite where it is today; however, there was a turning point when I was told to infuse on a schedule, also known as prophylaxis, and not on demand. This put me in the driver’s seat! With prophylaxis, I was inspired to take even more control of my body and its needs. I started to work out more regularly because I remained faithful to my treatment regimen and that helped to protect against potential bleeds.

Your hemophilia A diagnosis prompted your family to move. Can you share a bit more about that?

I’ve had hemophilia A since I was born. Even though I was born in Albuquerque, my family didn’t stay there for long. We moved to Mexico, but my parents quickly realized that the treatment I needed wasn’t readily available. They decided it would be best for us to move to Phoenix after talking to one of my mother’s friends, who also has children with hemophilia, mentioned that Phoenix has a hemophilia treatment center.

For over 20 years, my whole family has lived in Phoenix. Both the Arizona Hemophilia Association and the hemophilia treatment center are like a second family to us. They’ve always gone out of their way to explain things and really include everyone in my family in all parts of my treatment and overall care.

What was your early experience with hemophilia like?

As an energetic boy with severe hemophilia A, I often had bleeds, though the scariest one happened when I was two. Fortunately, I don’t remember it, but my parents do. I had suffered two brain hemorrhages and my parents were told that I might never speak again. At the age of three, I went to school for speech therapy and now I speak both English and Spanish. At a young age, I enjoyed watching sports, especially soccer, basketball, and baseball. My dream was to be a pro athlete; I wanted to be like Michael Jordan or like Thierry Henry. Of course, that wasn’t a possibility due to my condition.

How have you been treated for hemophilia A?

I was on a prophylaxis treatment, but when I was seven, my doctors talked to my parents about beginning factor replacement treatment with ADVATE for my hemophilia A.

One of the big changes with ADVATE was that my infusion schedule changed. Now, I’ve been doing it for so long that it’s just a regular part of my routine. Whenever my dad and I would go on the men’s retreat with other guys from the community, my mom would always remind me to pack my factor. My family still likes to check up on me and always asks if I’ve done my infusion yet.

Learning how to self-infuse my treatments was one of the best moments at camp for me. That was when I felt that I could be more independent with my care.

From then on, I would self-infuse with my dad’s help because I sometimes would miss a vein. When I was younger, my dad and mom would infuse me in my port-a-cath. My sister would help get gauze or anything I needed. My parents called my sister “my nurse.” But by the time I was 14, I could self-infuse on my own all the time and my sister had to “retire.” Remember though, it is important to work with your doctor to make sure you are trained before you self-infuse.