Whenever I’m on social media, I find myself questioning everything. Is that picture real or made by AI? Is this headline accurate? Are these videos genuine? I mostly stick to following family and friends, though I do enjoy dog videos. When it comes to messages from strangers, I’m pretty cautious.
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Hemophilia is a rare disorder in which the blood doesn’t clot properly, resulting in the disease’s hallmark symptoms of bleeds — excessive bleeding that extends over a prolonged period of time — that in turn leads to other complications.
Hemophilia is sometimes a surprise in families. Research shows that approximately 30% of cases of hemophilia A and BÂ are sporadic, meaning there’s no known family history. “This happens when a new alteration in the F8 or F9 gene occurs by chance in an egg cell or…
Understanding hemophilia treatment options if you have inhibitors
Fact-Checked By Lindsey Shapiro, PhD
Hemophilia inhibitors can reduce treatment effectiveness and raise bleeding risks, but several therapies can help maintain control. Understanding your options can support more confident, informed care decisions.
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.
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…
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…