Language barriers can make hemophilia conversations feel confusing, rushed, or isolating — but clear communication is essential for safe, confident care. Understanding your rights, asking for support, and advocating for your needs can help ensure your voice is heard.
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A second opinion can bring clarity, reassurance, and confidence when making important hemophilia care decisions. Exploring another expert’s perspective may help ensure your treatment plan aligns with your needs, priorities, and long-term health goals.
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…
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…
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.
A single infusion of Hemgenix (etranacogene dezaparvovec-drlb) helped boost levels of factor IX (FIX), the clotting protein missing in hemophilia B, in many patients who already had antibodies against the viral carrier, according to new trial data. The findings suggest the gene therapy may benefit a broader group of…
People living with hemophilia face a 46% higher risk of bone fractures than the general population, with that risk increasing for those with severe disease or a history of treatment-blocking antibodies. These are the findings of a large-scale Canadian study that highlights a growing health concern for patients as…
Most of the writing I see about mental health suggests that addressing the obstacles in your way is crucial to discovering joy. While it’s important to discuss the challenges we face in the bleeding disorders community, we must also remember to celebrate and give thanks when we conquer a mountain.
Some of the funniest commercials are for insurance companies. Allstate’s Mayhem always makes me laugh. The GEICO Gecko is a fun, familiar character, and so are Flo from Progressive and Liberty Mutual’s LiMu Emu and Doug. But one series of commercials feels…
Hemophilia is best known for symptoms such as prolonged bleeding after an injury, easy bruising, and spontaneous bleeding into joints or muscles. Over time, repeated bleeding can also lead to less common complications. One of the rarest is the development of hemophilic pseudotumors, or benign masses caused by…