Columns

We shouldn’t have to battle with insurance to access PNH care

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, I braced myself for fatigue, transfusions, brain fog, and regular blood work. What I didn’t expect was how much energy I’d spend fighting a second battle — one with my health insurance company. Living with a rare disease…

Helping my partner better understand PNH brought us closer

When you have a rare disease like paroxysmal nocturnal hemoglobinuria (PNH), it affects every part of your life, including romantic relationships. In addition to managing symptoms and navigating treatments, one of the most difficult parts for me was figuring out how to help my partner truly understand what…

Back to school with PNH: Pursuing a goal I’d put on hold

Before I got sick, college was part of my plan. It wasn’t just a dream; it was a goal I was actively working toward. Then came my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH), and suddenly everything paused. Life turned into blood tests, infusions, and learning to survive…

What I look for in a partner as someone living with PNH

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…

Finding the right PNH treatment isn’t a one-time decision

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…