I’ve lost count of how many times I’ve seen phrases like “victims of hemophilia” or “afflicted with hemophilia” in local news articles. Sometimes the phrase is “suffering from hemophilia.” To many readers, these words might sound sympathetic — even caring. But to those of us…

There is never a time that I do not worry about my sons. “MacDonald the Older” is 23, but not a day goes by that I do not feel concern for his welfare. The phrase “don’t do anything stupid” keeps running through my head. Will I get a call from…

Women who are carriers for hemophilia — meaning they can pass the disease-causing mutation to their children — think a more individually tailored, information-rich healthcare approach could improve the experience of getting or being pregnant, a small study found. “Healthcare professionals could use these insights to adapt their consultations to…

Life with hemophilia can be challenging but there are ways that you can manage the disease to ensure your child leads as normal a life as possible. To help you navigate your child’s illness and help prevent bleeds, we’ve put together a list of tips. MORE: How to prepare for your child’s…

“Write about the first time you witnessed me with a bleed,” offered my husband Jared as we talked about my column over breakfast. Couples usually remember firsts. The first date. The first kiss. The first of anything special or unique to both of them, including the good and…

Dimension Therapeutics’ gene therapy candidate drug DTX101 shows promising results by improving the levels of blood clotting factor IX (FIX) in adult patients with moderate/severe to severe hemophilia B, the company said. Hemophilia B is caused by FIX deficiency, due to mutations on the gene that encodes this protein. Treating…

Delaying the start of immunosuppressive treatment in adults diagnosed with acquired hemophilia A who are receiving Hemlibra (emicizumab-kxwh) to prevent bleeding may reduce the risk of infections and extend survival, a clinical study found. Patients in the Phase 2 study (NCT04188639 received Hemlibra for 12 weeks while immunosuppression…

When my first son, Julian, was born in 1996 and diagnosed with severe hemophilia A, I thought my world was ending. I expected to give birth to a healthy baby boy. I never dreamed he’d have a medical condition. I went through the stages of grief: denial,…

SPK-9001, an investigational gene therapy being developed by Spark Therapeutics and Pfizer, continues to demonstrate great potential to treat hemophilia B patients in an ongoing Phase 1/2 clinical trial. The latest results showed that the annualized bleeding rates of all treated patients were reduced by 98%. In…

Eating well is important for everyone, but particularly for those living with hemophilia. Eating a diet that encourages strong bones and muscles and helps keep you at a healthy body weight is essential. MORE: Young boys explain what it’s like to live with hemophilia Obesity is becoming a major problem when it…