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…
Living with paroxysmal nocturnal hemoglobinuria (PNH) isn’t just about managing what’s happening today; it’s also about facing what could happen tomorrow. As much as I try to live in the moment, I’d be lying if I said the potential complications of PNH don’t cross my mind. The truth is,…
Living with paroxysmal nocturnal hemoglobinuria (PNH) since 2017 has taught me that finding the right physician is as important as the treatment itself. Because PNH is rare, I need a doctor who is more than a medical expert — they must also be a partner in this…
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…
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