Hemophilia News Today – The Web's Daily Resource for Hemophilia News
The Web's Daily Resource for Hemophilia News
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Latest posts
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Guest Voice: My child with hemophilia can do more than people think
I never thought my life would be so challenging when I gave birth to my son, Zyko, who was diagnosed with severe hemophilia A. But he gives me a reason to keep going and give him everything I can. When I learned that my son had hemophilia, I quickly thought about what I needed…
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Liver enzyme elevations may recur after hemophilia B gene therapy
Liver enzyme levels may rise again as corticosteroid doses are gradually reduced in people with hemophilia B treated with Hemgenix, a case report suggests. Elevated liver enzymes are a known side effect of the gene therapy that can signal liver inflammation or damage.…
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A mother’s story about shortcomings in care for bleeding disorders abroad
The email started with two words: “Good night.” I understood it right away. It’s what a mother writes when the house is finally quiet, but her mind isn’t. Her name is Deiralina Morillo, and she lives in the Dominican Republic. Two of her three children, both daughters, have…
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When your child’s necessary treatment results in medical trauma
If I could change one thing about my parenting, I would have learned to manage my temper during my sons’ factor infusions. Julian and Caeleb are 10 years apart, but both live with hemophilia A and developed a fear of needles around age 6. My wife and I tried everything we could…
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Things that scare me as a care partner
Halloween is one of my daughter’s favorite holidays. She looks forward to creative costumes and makes drawings of pumpkins, ghosts, and bats. Here in the Philippines, people have different attitudes toward the occasion, but that hasn’t dampened her enthusiasm. As I write this,…
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Doctors offer tips to improve care for women, girls with hemophilia
By educating and empowering patients and their families, clinicians can help improve access to accurate diagnoses and care for women and girls affected by hemophilia. That’s the argument made by a pair of doctors in Belgium in a paper titled, “How I Identify and Diagnose…
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My grandmother had a bleeding story. I had a hemophilia diagnosis.
Every new hematologist asks the same question: “Who else in your family has it?” For most of my life, the answer was nobody. Nobody with a diagnosis, anyway. I was diagnosed with hemophilia B and von Willebrand disease (VWD) in 1975, at age 10, and I was the only one in my…
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Care disruptions fueled pandemic stress for patients in China
Treatment disruptions during the height of the COVID-19 pandemic were a substantial driver of psychological distress for people with hemophilia in China, causing more stress than the virus itself, a study found. The researchers said the findings underscore the importance of…
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From our voices to theirs: Teaching our sons with hemophilia to self-advocate
Long before our sons could advocate for themselves, my wife, Cazandra, and I spoke on their behalf. At the beginning of every school year, we met with the principal, school nurse, social worker, faculty, and other staff members who would work with them. We explained concerns…
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Oral hemophilia A treatment shows promise in preclinical studies
Inno8, a potential oral treatment to prevent bleeds in people with hemophilia A, appears more potent and long-lasting than currently available injectable treatments in preclinical laboratory and animal studies, a study suggested. The candidate therapy, being developed by Novo…