Being unemployed or under-educated can have a negative effect on hemophilia patients’ quality of life, including their pain levels and ability to function, according to the results of a questionnaire that were presented at the ASH Annual Meeting and Exposition. In the patients surveyed, increased pain, functional impairment and reduced…
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Hemophilia A is a rare genetic disorder affecting blood clotting, primarily in males, due to a deficiency in factor VIII. Lack of employment or college education negatively impacts hemophilia patients' quality of life, increasing pain and functional impairment. Advocacy and education are crucial for managing hemophilia, with resources available through support groups and organizations like the National Hemophilia Foundation, which received a CDC grant for educational programs.
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Advocacy doesn’t always mean protests or politics; sometimes it begins with a parent learning everything they can to protect their child. One mother shares how speaking up for her sons with hemophilia helped teach them to one day speak for themselves.
Hemophilia A is a rare genetic disorder that affects the blood’s ability to clot properly. It is the most common form of hemophilia, responsible for 80% of all cases.
The National Hemophilia Foundation (NHF) has received a $500,000 grant from the Centers for Disease Control and Prevention (CDC) to support education and outreach efforts in bleeding disorders. The five-year funding will help the NHF conduct programs for patients and healthcare providers related to inhibitor awareness, treatment for…
Walking into a new hematology visit can feel overwhelming, but preparation and clear communication can help you feel more in control. This guide shares simple ways to advocate for yourself and build a care partnership that truly listens.
My oldest son, Julian, was 10 years old, when we first saw the musical “Wicked” onstage. Our family’s love for live theater is a bond we cherish. As we watched and listened, I heard a lyric that made me shudder: “Unlimited. My future…
Hemophilia can affect many aspects of life, including sexual health. If you have hemophilia, sexual activity is generally safe as long as certain precautions are taken.
In the U.S., hemophilia A is estimated to affect one in every 5,000 male births, hemophilia B one in 25,000 male births, and hemophilia C one in every 100,000 people (males and females). Hemophilia A is thus four times more common than hemophilia B, and about 10 times more common than…
Hemophilia is a rare disorder in which a person’s blood is not able to clot properly, resulting in unusually easy and prolonged bleeding.