Emily’s Story
Ethan was diagnosed with severe hemophilia when he was a year old. At that time, there was only one medication to treat his form of hemophilia (factor 9 deficient, hemophilia B). Ethan was able to infuse only once per week, however, as he grew, the expectations were that he would need to eventually infuse two (or more) times per week.
A year later, we were approached by his doctors to be a part of a research study for a long-acting factor 9 product. We enrolled him in the study which ultimately was a great success for our family. Ethan still uses this product, and it has allowed him to maintain a regular once-per-week infusion schedule which will continue for the foreseeable future. Without the research, we wouldn’t have had the opportunity to improve Ethan’s quality of life and, ultimately, the lives of other kids like him.
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