Diagnosed with hemophilia as a baby, Jon Moore, StemExpress Partnership Liaison in Folsom, has made major life decisions based on living with this disease.
Hemophilia is a blood disorder with varying levels of severity. In all cases, however, people living with hemophilia are missing a clotting factor in their blood which puts them at a higher risk if they sustain an injury resulting in a bleed. It takes much longer to recover and in some cases, can bleed extensively for long periods of time.
Concerned for his safety, Jon’s parents did not want him to play contact sports as a child so he turned to swimming, but as he grew older he noticed his friends riding skateboards and bikes and he wanted to be a part of the action. With a strong support system and many direct conversations about the risks involved, he pushed the envelope, increased his physical activities and even played football in high school.
All along the way, however, Jon routinely visited the doctor and received blood draws to monitor his Factor levels. One day, the nurse administering the draw asked both him and his mom if he’d like to donate his blood for research to help find new treatments. Jon distinctly remembers the nurse saying, “Your blood is so valuable.” And she was right.
Jon has been donating his blood to research for nearly 25 years and has seen firsthand the results of his efforts.
To manage this disease, Jon used to have to take medicine every 12 hours...until recently. Researchers have developed new treatments that now enable Jon to take medicine every three days. This is a significant breakthrough and Jon hopes that in his lifetime, they will develop treatments that will only need to be taken once per year.
Jon’s passion for research and helping others has led him to StemExpress, but has had stops along the way as a lead phlebotomist and trainer at a northern California blood bank, as well as a lead tech and site manager for StemExpress before settling into his current role.
Additionally, Jon has spoken at the National Hemophilia Conference in Northern California. His message to others living with hemophilia is clear: Don’t let the disease define you as a person.
Great advice, Jon. And thanks to your continued commitment to research.