Adapted from the story Alex shares as a Hemophilia Peer for Sanofi Genzyme. Peers have been compensated for sharing their stories. This story reflects the real-life experiences of a patient with hemophilia B who has been prescribed a Sanofi Genzyme product. However, individual experiences may vary, and this story is not necessarily representative of what another person may experience.
This is a paid public announcement from Sanofi Genzyme and does not constitute an endorsement of products or services. When you click on the links in this blog entry, you will be directed to a Sanofi Genzyme website. LA Kelley Communications always advises you to be a savvy consumer when contacting any company; do not reveal identifying information against your will.
When I was seven years old, growing up in Colombia, I wanted to see how the neighborhood looked from the roof of my house. I knew I shouldn’t have been up there, but I was a curious kid who didn’t like to be held back. On my way down, I fell and got a bad cut that landed me in the hospital for a week.
For someone with moderate hemophilia, I had a lot of bleeds growing up. This was primarily because I tested my limits, trying all the activities kids with hemophilia shouldn’t, and because of the available treatment at that time. We didn’t have prophylactic therapies to protect against bleeds. Every time I hurt myself, I’d have to go to the hospital for immediate treatment of plasma, taking days and weeks out of my childhood.
“Maybe if you didn’t take so many risks!” my mother told me. Yeah, right.
Hemophilia, to me, was a thorn in my foot, challenging my potential to move forward. I remember looking out the window of the hospital as a kid, gazing out over the landscape, longing for a life uninterrupted by bleeds – because I had no intention of slowing down.
Do you think I grew out of that? Of course not! As an adult, I regularly saw my hematologist for check-ups, and if I got hurt, I’d go to the hospital for a factor infusion. But those bleeds could keep me at home recovering for weeks, so I missed a lot of work. In 1996, when my wife, Isabel, gave birth to our second daughter, Isabella, it finally clicked for me that I needed a steady job, with a steady income to support my family, and good insurance. And, by no means was I doing enough to manage my hemophilia.
When my youngest daughter was old enough to take an interest in playing soccer, I started helping coach her team. I love soccer and was excited to get involved, but it was even more reason for me to stop gambling with my health and my safety.
I told my doctor at the hemophilia treatment center I wanted to try something different with my treatment. I wanted to get ahead of my bleeds by treating before not after – as I’d done my whole life. I started going to hemophilia symposiums, which were great for staying up to date on different treatment options, and that’s where I learned about a prophylactic treatment for Hemophilia B that might work for me. I immediately got in touch with my doctor and told him I wanted to discuss trying this treatment.
I made the switch from on-demand to prophy six years ago. I was well-prepared for the transition. To be sure, doing infusions every two weeks, finding a vein, is stressful, but I am comforted knowing I am taking steps to be prepared for the future. Of course, everyone’s experience is different, and patients should talk to their doctor about what’s right for them.
Prophy allows me to be proactive about my health and focus on what I want to do.
I am not only being proactive about my health but about my happiness. I’ve biked all the way from Washington D.C. to Florida. I boogie-boarded in Brazil and surfed in Hawaii. I went to Mexico, and I swam in beautiful, blue water and enjoyed sunsets with my family. My life has been full, and there’s so much more I plan to do.
I wonder sometimes what my life would have looked like if prophylactic treatments were available earlier in my life. It is amazing to see today that kids with hemophilia have the opportunity to live life in a way I wasn’t afforded. However, as a father now, I can’t recommend standing on roofs.
To hear other stories like mine or learn about a treatment option for HEM B, check out https://bit.ly/30mc6fE.