Pushing Past Hemophilia 

Tuesday, April 16, 2024

Balancing hemophilia with a passion for sports and adventure

Rylee, a 20-year-old electrical engineering student, has a passion for learning, adventure, and sports. Rylee was born with severe hemophilia A, a genetic blood disorder in which typical blood clotting does not occur. Despite the daily challenges of preventing and controlling his bleeds, Rylee has not let hemophilia interfere with his life goals and ambitions.
Last summer, Rylee completed a 51km backcountry hike in Kananaskis AB, on the eastern slope of the Canadian Rockies. “I had always had this bucket list goal of hiking in the mountains. It was an ambitious goal for me, considering I had never been backpacking before. But I called up three friends, and we just decided to go. It was exhilarating! I was sore when I got back, but a healthy sore.”

In addition to his hiking accomplishment, Rylee finished his first half marathon in Regina in September. He plans to run the race again this year, aiming to surpass his previous time. This May, he also begins a one-year internship at a satellite communications company. He developed a passion for the space industry after participating in the Canadian CubeSat Project where he and his fellow teammates designed and built a miniature satellite, which was launched into space from the Kennedy Space Center in Florida last spring.

Living with Hemophilia: ‘It’s just something I grew up with’

Rylee says living with hemophilia requires constant vigilance and adherence to treatment protocols, but all things considered, he has been fortunate. "I have to be infused regularly with a treatment to ensure my clotting levels stay high enough so that I don’t bleed. When I was a baby, my parents would drive me to the hospital to get these injections every second day," Rylee recalls. “When I was hurt, my parents would sometimes have to drive into the city every 12 hours. They said sometimes I refused to take off my shoes in the doctor’s office – even just to be weighed - because they would do the injections in my feet.” At around the age of three, Rylee got a port, which allowed his parents to administer the injections at home. “That was just something I grew up with. It all seemed pretty normal to me."

Rylee started injecting his own treatments into his veins at the age of 12. “It wasn’t pleasant. No one enjoys needles - but self-administering has given me so much more freedom and control over my life," he admits. Rylee now injects his treatments into his thigh every two weeks.

Over the years, Rylee has faced the occasional challenge when his medication would start to wear off. "If I went for a run on the second day without treatment, my ankles would start to swell up. Or if I banged my elbow, it would start to swell up, and I knew something was wrong. I would get the feeling that my joints were bleeding," he explains.

There were also times when Rylee had major bleeds, especially when he was younger, and had to endure bed rest for weeks. "I would have to sit at home and watch TV for a few weeks while my body was recovering. It was tough because I like to be active," he admits.

Prioritizing Sport and Activity

Rylee says it has always been a priority for him to lead an active lifestyle. “Being active is part of being healthy. When I was younger, I was not allowed to play any high-contact sports like football or hockey. A concussion or head injury of any kind could be life-threatening for someone with my condition. But my parents did allow me to play volleyball, basketball, and even soccer," he shares.

Rylee says when he was little, his mom used to worry a lot about him. “She was concerned I would get hurt. Then one day she decided that although it was important for me to take precautions, I also needed to be a kid and that part of being a kid is getting injured from time to time. Luckily my injuries haven’t been too severe and I was been able to experience a relatively normal childhood.”

Rylee says treatments have progressed considerably over the years. “It’s amazing to see how far treatments have come in my lifetime alone. I have more freedom today than ever before. That being said, there is always room for innovation. I think it’s important that everyone with hemophilia has access to new treatments. Everyone deserves the best possible care available to them.”

Pfizer’s Commitment to Hemophilia
Pfizer is proud to have pioneered hemophilia innovation for more than 40 years, and we are building on today’s standard with the goal of continuing to advance the treatment paradigm and patient care. We continue to innovate so people with hemophilia can live life to the fullest.

For more information and resources on hemophilia, please visit the Canadian Hemophilia Society's website at https://www.hemophilia.ca/.