Real Stories from People Living with Hemophilia – Jane

Jane’s Story

“Leland has hemophilia. At 15 months old, Leland developed a complication called an inhibitor. This means that his body, his immune system, fights off the medicine – the infused factor VIII. That, quite honestly, pulled the rug out from underneath us, when the preferred methods of treatment were no longer options for us. The alternative clotting factors that we use to control bleeding are much less effective. His treatment more closely resembles that which was done a generation ago; he doesn’t benefit from a lot of the advances in treatment that help his peers who don’t have an inhibitor.

“The complications of long-term damage to his joints, the unrelenting pain, just general quality of life, that’s been by far the biggest challenge. Another big challenge for us as a family and, for my husband in particular, is the high cost of hemophilia in general and treating an inhibitor in particular. My husband has had to make career choices based on maintaining good health insurance.

“Having a son with hemophilia and then, the added challenge of an inhibitor, is not always easy. As a parent, I would love to fix things and make everything better. The inhibitor has taken away a lot of the control that parents have in effectively managing hemophilia. We don’t really have a proactive management of the bleeding; we have to wait until bleeds happen, and then deal with them from there. I’ve watched him sit out and miss a lot of important life experiences, including most of high school. It’s not what I envisioned when he was a baby and first diagnosed.

“Fortunately, there have been many other positive life experiences that have come from having hemophilia. He’s been in Washington advocating to his legislators, he’s a regular guest speaker at Harvard Medical School, and he’s traveled around the country for community events. How many teenagers get to do that? Hopefully these experiences help maintain some balance, for both Leland and our family as a whole.”

CDC would like to thank Jane and her family for sharing this personal story.

If you would like to share your personal story, please contact us at Contact CDC-INFO