For decades, people with hemophilia have benefited from remarkable advances in treatment. Meanwhile, many people living with von Willebrand disease (VWD) have continued relying on therapies developed more than 20 years ago. Too often, VWD itself has been misunderstood or minimized. Even getting diagnosed can be complicated.
While nearly one-third of people living with hemophilia are female, a new global survey reveals that many of these patients remain undiagnosed due to systemic healthcare barriers and social stigma. Researchers representing the World Federation of Hemophilia (WFH) are calling for a coordinated effort to improve diagnostic access…
Discussion
First in a series. When our sons were babies, my wife and I depended on our home-care company to infuse them with a clotting agent to combat the internal bleeding caused by their hemophilia. Infusions require a steady hand to hold the needle, insert it into a…
Discussion
In January 2017, I lost my mother, who had fought cancer for several years. I fell into a deep depression, and then suddenly found out I was pregnant. The new life inside of me helped me slightly overcome the depression. I started taking better care of myself and researching…
Discussion
As a chaplain, I am privileged to stand at the bedside of someone who is dying. Often, few words are exchanged. I know it is my presence there that matters most. When people learn that I work in hospice, they often say, “Oh, my goodness, that must be hard work.
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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