Dear hemophilia, Truth be told, I hate you sometimes. I especially hate you when you suddenly pop out of nowhere and find ways to ruin my husband’s life. I hate you when you encroach on plans made weeks in advance; long-standing plans that were carefully and painstakingly thought out. As…
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Last school year, my youngest son, Caeleb, had a difficult time as pain in his right knee and ankle resurfaced. Thank God he didn’t have any bleeding episodes, but he experienced the chronic symptoms of damage to his joints caused by past internal bleeds. His pain often proved too…
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.
Second in a series. Read part one. A hemophilia inhibitor is like a firewall in a computer network. Clotting factor replacement therapy is supposed to enter the bloodstream and help form clots to stop bleeding, just as data should pass through a network without interruption. However, an inhibitor acts…
My bleeding disorders, hemophilia B and von Willebrand disease, have significantly affected my family. As I’ve aged, my appreciation for my family has grown tremendously. I’ve come to realize that hemophilia‘s impact isn’t just limited to me; it’s also affected my family in profound ways. True, patients…
Catalyst Biosciences announced the beginning of enrollment for a Phase 2b clinical trial for dalcinonacog alfa (DalcA) in people with Hemophilia B. Hemophilia B is caused by the lack of a functional Factor IX clotting protein. Like many available therapeutics for Hemophila B, DalcA is essentially a lab-manufactured version…
Hemophilia treatments in Thailand are limited due to a lack of budgetary resources, the high cost of medications, and an infrastructure inadequate for supporting patient care, a study found. These hurdles mean that people with hemophilia in the Southeast Asian country may not be able to access the care…
Today, when girls and women struggle to obtain a hemophilia diagnosis and proper treatment, I am angry. We need to do better. A timely diagnosis is crucial, as delayed testing or treatment can endanger women — especially if they are in an accident that causes bleeding…
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.
I hate it when the term “hero” is used to describe me and my daily life with hemophilia. Honestly, I despise it being used to describe anyone living with a rare disease or disability. I think it’s the wrong word, as its use can inadvertently minimize the emotional challenges…