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First-in-human trial of hemophilia B treatment BE-101 starts dosing
For the first time, as part of a U.S. clinical trial, the cell therapy BE-101 has been administered to someone with hemophilia B. Be Biopharma, the company developing BE-101, announced the dosing of the first participant in a first-in-human Phase 1/2 clinical trial called BeCoMe-9 (NCT06611436). The…
Living with hemophilia taught my son to always have a plan B
We received some unexpected news this week from the University of New Mexico, where our youngest son, Caeleb, is a rising sophomore. Although we had thought he’d be able to move into a dormitory on campus this fall, it appears he’s still on a waiting list, and the chances…
What my numbness and tingling hands taught me about hemophilia
In kindergarten, my teacher had a daily ritual: story time. My friends and I would race to the corner and sit “crisscross applesauce” on the boldly colored carpet, eagerly awaiting the story. Next to recess, it was the best part of the day. The teacher read with excitement, allowing us…
Hemophilia treatment
Although no cure for hemophilia is currently available, a number of therapies can be used to control bleeding and other symptoms. These treatments can substantially increase life expectancy by lowering the risk of life-threatening complications such as bleeding in the brain, especially in people with severe hemophilia.
Finding life’s miracles despite living with hemophilia A
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” — often attributed to Albert Einstein I live with a bleeding disorder, hemophilia A. Survival often is truly about attitude, optimism, and perseverance.
Expanding Alhemo to hemophilia without inhibitors recommended
A committee of the European Medicines Agency (EMA) has recommended that the approval of Alhemo (concizumab-mtci) be expanded to cover its use to reduce the risk of bleeding in people with severe hemophilia A and moderate or severe hemophilia B who don’t have inhibitors. The recommendation from…
Even with hemophilia, it’s possible to have high standards for love
People often assume that loving someone with hemophilia — and in my husband’s case, epilepsy, too — must come with endless patience, unshakable optimism, and the kind of soft, gentle pity we reserve for those we imagine can’t carry their own weight. But mine is a different kind of…
Study ties hemophilia pain, infections to mental distress
People with hemophilia have significantly higher rates of depression, anxiety, stress, and overall mental distress than healthy individuals, with physical symptoms playing a role, a study in Germany found. These include “pain-related parameters, but also manifested arthropathy [joint disease] and the presence of viral infections,” the researchers wrote, which…
Helping your child be more than their hemophilia diagnosis
My oldest son, Julian, was 10 years old, when we first saw the musical “Wicked” onstage. Our family’s love for live theater is a bond we cherish. As we watched and listened, I heard a lyric that made me shudder: “Unlimited. My future…