Nothing makes me happier than when my oldest son, Julian, is home and my family is all under the same roof. We cook, laugh, and watch movies. My happy place is with my husband and two sons. One night over dinner, our conversation moved toward the high school band…
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An ultrasound-mediated, non-viral gene therapy safely and effectively increased the levels of factor VIII (FVIII) — the missing clotting factor in hemophilia A — and lessened bleeding in a mouse model of the disease, a study shows. The delivery of a modified, improved version of the disease-associated F8 gene…
I recently attended a webinar called “Impact of Factor 8 on Bone Mineralization,” sponsored by Factor My Way, a patient support program. It featured Claudio Sandoval, MD, who has over 30 years of experience treating people with bleeding disorders and is passionate about bone health, an often overlooked aspect of…
Save One Life, the first globally focused organization to sponsor children with bleeding disorders one-on-one, recently celebrated its 15th anniversary. More than 130 guests from the hemophilia community worldwide gathered in New York City Sept. 29 at the Manhattan Penthouse on Fifth Avenue. The guest of honor was…
A newborn in China was diagnosed with hemophilia B after a ruptured liver caused significant abdominal bleeding, according to a case report. Due to early detection, timely surgical repair, and immediate factor-replacement therapy, the infant made a full recovery. This case shows that “neonatal hepatic rupture may be…
A sealed jar that no one can open. A faucet attachment that’s been screwed on too tightly. A piece of furniture that needs to be moved. These are just some of the problems we encounter at our home on a regular basis. And the one person who can solve them?…
Despite preventive treatment, people with hemophilia A or B report lower quality of life, mainly due to poor joint health, a study in Sweden shows. No significant difference was found between these two patient groups, who report high frequency of pain, mobility problems, and mental health issues like anxiety…
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…
My son Caeleb recently started college. He’s enjoyed the beginning of school and appreciates the flexibility of his schedule, but there’s one problem: his mobility. Caeleb lives with severe hemophilia A with an inhibitor. Persistent bleeding into his right knee and ankle resulted in irreparable damage and…