Dark to Hopeful - a Column by Shaquilla Gordon

Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things, but one of the hardest lessons has been learning how to stay positive during a flare-up. When symptoms hit — in the form of crushing fatigue, dark urine, headaches, or an overwhelming feeling of weakness —…

To the newly diagnosed, First, let me say that I wish we were meeting under different circumstances. You’ve just been told you have paroxysmal nocturnal hemoglobinuria (PNH), and I know how heavy those words feel. This is a club you never signed up for, but here you are —…

It’s been almost four months since I opened up in a column about the emotional roller coaster of living with paroxysmal nocturnal hemoglobinuria (PNH), and truthfully, that ride hasn’t stopped. But I’ve grown. I’ve learned to lean into the twists and turns instead of bracing against them. The…

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…

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…

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…

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…

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…