Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things — but one lesson I didn’t expect to learn was how complicated it can feel to ask for a medical second opinion. Let’s be real: There’s a stigma around it. Whether we say it…
There’s a quiet kind of strength that doesn’t get applause. It’s not loud or dramatic. It’s the strength it takes to keep going when your body feels like it’s quitting on you. The kind that gets up anyway, that smiles through fatigue, that finds peace in small moments others might…
Paroxysmal nocturnal hemoglobinuria (PNH) is more than just a tongue twister; it’s a rare, chronic blood disorder that alters every aspect of life. When I was diagnosed with it in 2017, I quickly realized I wouldn’t just be on a physical journey, but also an emotional and informational…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, food was the last thing on my mind. I was overwhelmed by appointments, blood work, and adjusting to my “new normal.” But over time, I realized that what I put into my body played a huge role in…
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…
Get regular updates delivered to your inbox.
