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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…

Looking back on how my health journey affected my siblings

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…

To travel with a chronic illness, pack caution and carry courage

Travel has always fed my soul. There’s something magical about exploring a new city, tasting different foods, or just watching the sunrise from someplace unfamiliar. But since I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, traveling has taken on a whole new meaning — it’s no longer…