Last in a series. Read parts one and two. For 21-year-old Domenic Catrine, hemophilia B once dictated every part of life, from wearing a helmet during childhood playtime to college routines shaped by weekly factor infusions. Then he underwent gene therapy during his sophomore year in…
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Hemophilia has a substantial impact on sexual function and well-being for many men with the disease, but they rarely discuss it with their doctors, a study from the Netherlands found. “To address this gap, tools designed to provide and assess information about sexual functioning and well-being to normalize the…
Men in South America with severe hemophilia A or B are hit with both direct and indirect costs related to the genetic disease, which also affect quality of life, a new study reports. As much as 99% of the direct costs of hemophilia were related to factor…
It can be so easy to be mad, particularly at the medical system. Even more so if you happen to be a woman with hemophilia. As I’ve shared a number of times, women with hemophilia have struggled for years to obtain a proper diagnosis and appropriate care.
Scarcity mindset is the belief that something you rely on will one day run out. It’s most often talked about in the context of money, which resonates with me deeply. As a neurodivergent person married to someone with hemophilia, money has always felt like one of my shields…
Becoming educated and informed about hemophilia is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your hemophilia journey.
There is no cure for hemophilia yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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