Last school year, my youngest son, Caeleb, had a difficult time as pain in his right knee and ankle resurfaced. Thank God he didn’t have any bleeding episodes, but he experienced the chronic symptoms of damage to his joints caused by past internal bleeds. His pain often proved too…
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“It’s my party, and I’ll cry if I want to, cry if I want to, cry if I want to. You would cry too if it happened to you.” On Sept. 6, my birthday, this 1963 Lesley Gore song, “It’s My Party,” played in a continuous…
News
AMT-061 Increases FIX Activity, Prevents Bleeds in Severe Hemophilia B Patients, Phase 2b Data Show
A single infusion of AMT-061 (etranacogene dezaparvovec), uniQure’s experimental gene therapy for the treatment of hemophilia B, led to increased and sustained activity of clotting factor IX (FIX), according to one-year data from a Phase 2b clinical trial. The therapy effectively prevented…
I hate it when the term “hero” is used to describe me and my daily life with hemophilia. Honestly, I despise it being used to describe anyone living with a rare disease or disability. I think it’s the wrong word, as its use can inadvertently minimize the emotional challenges…
A new online service allows patients with bleeding disorders like hemophilia to share important information about their treatment and bleeds with their healthcare team in real time. MORE: Five tips for living healthily with hemophilia The HemaGo XChange portal was created by Novo Nordisk A/S as an update to their existing website…
People with hemophilia are nearly four times more likely to experience sexual problems than are individuals without bleeding disorders, according to the results of a new international survey. The survey found that problems with sexual intimacy in patients with hemophilia were associated with older age, experiencing acute or chronic pain…
Women who are hemophilia carriers are at a higher risk of experiencing heavy bleeding after giving birth, particularly those who are not on a prophylactic, or preventive, treatment regimen, a new review study has found. Researchers say these findings indicate that more intensive preventive treatments might benefit carriers about…
The new year ushered in an unexpected surprise: the near demise of my six-year-old laptop. I lifted the rose gold aluminum top expecting business as usual only to find a huge black line running from the top of my screen to the bottom. To my horror, I also discovered the…
It’s 9 a.m. Bright, tropical rays of sunlight force their way through our full-length windows — a signal that it’s time to get out of bed. My husband, Jared, always an early riser, often gets up first. Today is no exception. He goes to our kitchen downstairs, contemplates what he’ll…
SPK-8011, also known as dirloctocogene samoparvovec, is an experimental gene therapy for hemophilia A. Given as a one-time intravenous or into-the-vein, infusion, it aims to reduce the risk of bleeds in patients.