My primary care provider recently retired and was replaced by a doctor new to my area. As I prepared for our first meeting, I reflected on how I usually approach my bleeding disorders. Typically, I don’t even mention hemophilia to a primary care doctor. I mutter terms like “bleeding…

My youngest son, Caeleb, recently graduated from high school and, at 18, is legally recognized as an adult. This milestone brings a host of new responsibilities and rights: He can vote, buy and sell property, sue or be sued, and enter into binding contracts. Despite all our preparation for…

Last week, my husband and I took our mighty warrior Caeleb to the hemophilia treatment center so that we could touch base with his hematologist. Caeleb recently had labs drawn, and it was time to sit for a meeting about his treatment. We were called to the back to…

My husband, Jared, and I work to earn a living. We freelance for various clients and run a business — though due to the state of the economy here in the Philippines, business isn’t as profitable as it used to be. In between jobs, we dedicate a significant chunk of…

Hemophilia takes a toll not just on the life of the individual who struggles with the disease, but also on the family unit. It is not easy to have a genetic disorder as a life focal point that does not go away. When a woman has hemophilia, it…

Patient dosing has been completed in a registrational Phase 3 clinical trial in China testing BBM-H901, Belief BioMed‘s (BBM)’s investigational gene therapy for hemophilia B, the company announced. BBM-H901 is designed to restore the production of factor IX (FIX) — the blood-clotting protein that is faulty or missing…

I eagerly anticipate a future where inherited bleeding disorders can be conclusively diagnosed, with absolute certainty, through genetic tests. Currently, conditions such as von Willebrand disease (VWD) pose diagnostic challenges, frequently requiring multiple tests over extended periods for confirmation. Although my initial diagnosis came after a single test,…

The Hemophilia Federation of America (HFA) is now offering mental health and well-being courses, through its Learning Central program, to support people with hemophilia, as well as their caregivers. Topic areas include anxiety, suicide, trauma, pain management, depression, and grief. Offered resources in the program’s library can be…

In the Netherlands, children and adults with hemophilia participate in sports as much or more than people from the general population, according to a study. The findings also indicated that disease severity affected sports participation only in adults, and that children with hemophilia were more willing to participate in…

March is Bleeding Disorders Awareness Month, when patients and families who live with bleeding disorders post facts on social media and share their stories to educate those with little understanding of how a chronic illness affects daily life. I have participated in numerous events to educate the community, and this…