The summer months bring relentless heat. In the desert of New Mexico, where we live, the thermometer often hits triple digits. While some people love the heat, others tolerate it, seeking shelter in the shade of a tree or in an air-conditioned area. Staying cool isn’t just a…
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I receive an email saying the test results from my second bone density scan are in. Shaking and holding my breath, I click on the link and sign into my patient chart. I am exhausted. As I continue to wait for insurance to approve a trial of my fourth factor…
The benefits of a one-time gene therapy were sustained for up to 13 years among men with severe hemophilia B with no new safety concerns emerging, according to newly published results from a clinical trial. The findings, which encompass the longest ever follow-up for a gene therapy study in…
Living with hemophilia and epilepsy has shaped much of my husband’s life — but fatherhood transformed it. Before our daughter was born, Jared, my husband, already carried the weight of two chronic conditions. He’d long made peace with a life of calculated risks, limited physical activity, and the unpredictability…
When I was diagnosed with hemophilia B and von Willebrand disease in the 1970s, I was just 10 years old. Back then, most people didn’t believe girls could have hemophilia. I was told that my “deep blood” didn’t clot properly and sent on my way. Bleeding…
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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