Garrett Hayes, who is studying medicine in Texas and has a severe form of hemophilia A, is the first recipient of the National Hemophilia Foundation’s (NHF) Jason Fulton Memorial Scholarship. The scholarship honors the memory of Jason Fulton, a hemophilia patient who died in 1995 at age…

Doctors often overlook female problems caused by hemophilia. I have many examples of this concept, but few are as upsetting as when I almost ruined a family vacation in 1990. Precancerous cells had invaded my cervix and needed removal. The procedure terrified me! I gathered several opinions, eventually landing…

“Pain” is a short, four-letter word, but its meaning is complex for those affected by chronic illness. For example, my youngest son, who lives with severe hemophilia, also known as factor VIII deficiency, once described the feeling of an internal bleed as sharp needles continuously attacking a joint.

My adult son, Julian, came home for Thanksgiving. When he walked into the house, I sensed that something was wrong. First, he told me he was in the early stage of a bleed in his leg. He then told me he left his factor at his home, five hours…

In the first clinical trial of the experimental therapy SIG-001 for hemophilia A, one patient developed scarring in the spheres used to deliver the therapy that rendered the treatment ineffective, its developer, Sigilon Therapeutics, announced. The Phase 1/2 trial was put on hold by the U.S. Food and Drug…

Preventive treatment with Hemlibra (emicizumab) is safe and can effectively prevent bleeds in people with mild or moderate hemophilia A, according to an interim analysis of data from the HAVEN 6 clinical trial. Results will be presented at the annual meeting of the American Society of Hematology (ASH)…

My son, Caeleb, recently had his first appointment with a new dentist following our recent move, which led to our first experience with an old concern: post-traumatic stress disorder (PTSD). Caeleb, 15, has had a fear of needles for many years, and as part of his hemophilia…

A partnership between Emmes and MedGenome seeks to accelerate development of genomics-powered therapies for people with rare diseases, such as hemophilia. The companies plan to combine patient data into custom disease registries to improve research design and help with patient recruitment for clinical trials. In addition, they…

As I slowly approach the big three-zero (two more years to go!), I can’t help but reflect on the state of my health. Physical symptoms scare me now more than ever, and I want them checked as soon as possible. I’ve been trying to commit to healthier habits as well…

I cut my thumb above my knuckle a few weeks ago. It didn’t seem like a big deal, but five Band-Aids later, I began to wonder. A few hours later, I noticed my knuckle was swollen, painful, and a bit blue. My thumb wouldn’t bend, and the swelling extended down…