When my oldest son was diagnosed with severe hemophilia in 1996, I learned that mostly men have the disease. Rarely did I hear of a woman with hemophilia. The terms symptomatic and asymptomatic were used to classify women who were carriers. If the mother of a child with…

When I was diagnosed with bleeding disorders in the 1970s, the world of hemophilia looked very different. Treatments were scarce, hospital visits were frequent, and the idea of living a “normal” life seemed like a distant dream. Today, I meet children and young adults with hemophilia who’ve never known…

Symptomatic spinal stenosis — the narrowing of spaces within the spinal canal, which can put pressure on the spinal cord and nerves — may be a complication in aging people with hemophilia, a study in Ireland reports. The risk of developing the condition increased with age, but it was…

Special care is needed to manage pregnancy and childbirth for women who have or are carriers of hemophilia, yet many hemophilia treatment centers in Italy don’t have a specific protocol in place for this type of management. Indeed, fewer than 1 in 5 centers in the European nation were…

The other day, I asked my husband, Jared, if he’d ever consider leading a harm reduction seminar for the teens in his hemophilia organization. His immediate response was, “Of course — but would the parents be ready for that conversation?” That question hit me. As…

Total hip replacement surgery for hemophilia patients is usually successful in creating a more functional joint, according to a systematic review study. However, clinicians and patients need to be aware of potential risks, such as infection and bleeding. “This paper confirms the findings of previous studies that [[total hip replacement…

 “I have seen so much progress for our community, and when I heard about a potential solution to ongoing prophylaxis treatments, I couldn’t wait to try it.” — Chip, 74, Gene Therapy Clinical Trial Participant In 1951, Chip was diagnosed with hemophilia B at 18 months old, during a time…

Some days it’s easy to see the cracks in our family’s situation — the unpredictable costs, the logistics of keeping medication on hand, the mental load of being a partner to someone with severe hemophilia B and epilepsy. But every so often, I remind myself that there are…

“Whiskey-Bravo-six-Zulu-Yankee-Yankee looking for a radio check,” my dad called out into his faithful Kenwood handheld 2-meter radio. “W-B-6-Zed-Y-Y, I hear you loud and clear,” came an answer from radio land. This was my dad’s call sign — the constant background noise of my youth. Ask any childhood friend who spent…