Some days I wake up and forget for a few golden seconds that I have paroxysmal nocturnal hemoglobinuria (PNH). My eyes flutter open, and there’s no tightness in my chest, no pounding in my head, no crushing fatigue pulling me back into the mattress. There’s just morning light, the…
Living with paroxysmal nocturnal hemoglobinuria (PNH) for nearly eight years has shaped how I show up in every part of my life. It’s a quiet battle, mostly invisible to the outside world, but inside, it’s a constant balancing act. One of the most difficult and misunderstood symptoms I…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in May 2017, I had no idea how much my life — and my career — would change. At the time, I was fully immersed in my job as a financial analyst, balancing deadlines, meetings, and the typical stresses of…
Living with paroxysmal nocturnal hemoglobinuria (PNH) has changed so many aspects of my life, from how I care for my health to how I advocate for myself in the doctor’s office. But one of the most deeply personal shifts has been how I manage my relationships — with my…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, I felt powerless. I had no control over what was happening to my body and found myself at the mercy of doctors and medical jargon I barely understood. At first, too overwhelmed to push for my own needs,…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in May 2017, I thought the biggest battle I would face was the physical one. I was wrong. While the fatigue, blood clots, and pain were undeniably difficult, nothing could’ve prepared me for the mental and emotional toll this rare…
Life has a way of throwing unexpected challenges our way, and for me, one of them came in the form of the rare disease paroxysmal nocturnal hemoglobinuria (PNH). In May 2017, at the age of 27, I was diagnosed with this life-altering condition, which causes the destruction of…
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