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…
Search results for:
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…
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…
Alhemo (concizumab-mtci) is an antibody-based therapy that is approved to prevent or reduce the frequency of bleeds in patients with hemophilia A or B, with inhibitors. It is given as daily under-the-skin, or subcutaneous, injections that can be self-administered.
In my years of discussing my sons’ bleeding disorders here, I too have had a hereditary disorder: essential tremors, which I inherited from my mother’s side of the family. While my disorder isn’t life-threatening, several factors seem eerily similar to my sons’ struggles with hemophilia. My tremors don’t…