If there’s one thing living with paroxysmal nocturnal hemoglobinuria (PNH) teaches you, it’s that life rarely follows the script you wrote for it. For many of us, PNH didn’t just change our health; it changed how we measure time, how we define strength, and how we celebrate the quiet…
Dark to Hopeful - a Column by Shaquilla Gordon
Living with paroxysmal nocturnal hemoglobinuria (PNH) is not something you plan for. It’s not something you see coming. One day, life feels normal, and the next, you’re learning a new language made up of lab results, infusion schedules, symptoms (including fatigue that doesn’t go away), and a kind of…
Living with paroxysmal nocturnal hemoglobinuria (PNH) has a way of teaching you to hold two very different emotions at the same time: gratitude for how far medicine has come, and hope for how much further it still needs to go. Since my diagnosis in 2017, I’ve learned that…
Now that we’re settled into 2026, I want to share some intentions I’m setting rather than goals. Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me that life doesn’t always move in straight lines. Sometimes it pauses. Sometimes it forces you to pivot. And sometimes it asks you to…
After the holidays, most of us expect to return to our routine: familiar rhythms, predictable appointments, and the steady hum of normal life. But when influenza type A hit me hard recently, that return felt less like a reset and more like a collision of challenges — one that…
The holidays always create a pause, a soft space filled with food, family, laughter, and moments where illness politely steps aside, allowing joy to take the lead. But once the decorations come down and the calendar flips, life gently but firmly reminds me that we’re back to regular programming.
Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things, including patience, resilience, awareness of my own body and many symptoms, and an appreciation for every stretch of calm between the storms. But every now and then, something reminds me that no matter how strong I’ve…
As the holidays approach, I feel an especially deep pull toward gratitude. Living with paroxysmal nocturnal hemoglobinuria (PNH) has taught me many things — resilience, patience, courage — but nothing has been more powerful than the lesson of love. Not the easy, everyday kind, but the kind that shows…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, family planning wasn’t exactly the first thing on my mind. I was still trying to wrap my head around what this rare disease even meant for my life. But as time went on and the dust of the…
When you live with paroxysmal nocturnal hemoglobinuria (PNH), you learn early on that no two days are ever the same. Some days, I wake up with energy and hope. Other days, I’m reminded that this rare disease is unpredictable — it can shift and change without warning. One of…
Recent Posts
- New questionnaire assessing fatigue ‘reliable and valid’ for adults with PNH
- Progress in research and treatments is a reason for holding on to hope
- New gene study highlights clot risk factor in people living with PNH
- Becoming a patient advocate gave me purpose in the fight against PNH
- Study finds Ultomiris safe as PNH treatment during pregnancy