Recently, while talking to a fellow paroxysmal nocturnal hemoglobinuria (PNH) patient who is married, I mentioned that I always wonder how I’ll find a partner who understands my illness. She said that the right person will be a part of your life, no matter what. Her response brought me…
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Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me that treatment isn’t one-size-fits-all. It’s a journey, not a destination. When I was diagnosed in May 2017, I was overwhelmed. There were medical terms flying over my head, treatment options that sounded complicated, and an avalanche of fear…
A teenage girl with paroxysmal nocturnal hemoglobinuria (PNH) who experienced extravascular hemolysis, which occurs when red blood cells are destroyed outside of the blood vessels, saw her condition significantly improve after starting on Empaveli (pegcetacoplan) — a treatment currently approved only for adults with PNH. That’s according to…
When you’re diagnosed with a chronic illness, no one tells you how it will affect other members of the family, particularly siblings. I grew up in a close-knit family, and my mom and dad raised three strong, morally driven women who are resilient enough to face life’s challenges. But that…
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