In my years of discussing my sons’ bleeding disorders here, I too have had a hereditary disorder: essential tremors, which I inherited from my mother’s side of the family. While my disorder isn’t life-threatening, several factors seem eerily similar to my sons’ struggles with hemophilia. My tremors don’t…
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Rare Rewritten, a new campaign by the nonprofit group Remember the Girls, seeks to persuade prominent medical organizations to update their online information about women and girls with X-linked disorders. According to the group’s founder, Taylor Kane, whom I interviewed back in April, the campaign was created to combat…
The U.S. Food and Drug Administration (FDA) has expanded its approval of Alhemo (concizumab-mtci), a daily therapy injected under the skin for preventing or reducing the frequency of bleeding episodes in people with hemophilia A or B, ages 12 and older. Sold by Novo Nordisk, Alhemo…
As someone with attention-deficit/hyperactivity disorder, I crave a challenge. It doesn’t even have to be a significant one, just something that gives me a little feeling of accomplishment. A small win early in the day, such as solving a tricky problem, tidying a corner of my space, or…
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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