Nine years ago, I heard words that would completely change my life: I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH). At the time, I felt overwhelmed by fear and uncertainty. Like many people diagnosed with a rare disease, I had never heard of it before. Suddenly, I found myself…
A stem cell transplant using donor cells from close relatives was curative in people with paroxysmal nocturnal hemoglobinuria (PNH) co-occurring with aplastic anemia, a condition in which the bone marrow fails to produce enough blood cells, according to a study. At a median of nearly five years after the…
Discussion
On May 16, I had the opportunity to attend a patient and family conference in Tampa, Florida, with the Aplastic Anemia and MDS International Foundation, and I walked away with something much bigger than the usual information and resources. I left with connection, understanding, and a renewed sense of…
Treatment with C5 inhibitors, a class of approved medications for paroxysmal nocturnal hemoglobinuria (PNH) that block activation of the complement cascade — a part of the immune system that is overactive in the disease — was associated with partial recovery of certain immune cell populations, a study in China…
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