Columns

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…

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…

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…

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…

Life presents us with battles and trials we wouldn’t wish to face. Yet how do we choose to show up in the face of the unexpected? My journey through chronic illnesses, including paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, has offered countless life lessons. I’ve had enlightening moments…

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…

I get it. That’s the first thing I want any patient reading this column to know. I understand what you’re going through; you are not alone. After my diagnoses with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I experienced many emotions, including loneliness. Hearing that my blood…

You never think you’ll face health issues until you do. I wasn’t at all prepared for my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, and the news filled me with worry. I was thrust into a world of unknowns and forced to learn about two rare…

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…