A new 13-item questionnaire designed to assess fatigue and its impact on daily functioning in individuals with chronic illnesses appears to be accurate and may be appropriate for use in adults with paroxysmal nocturnal hemoglobinuria (PNH). That’s according to a new analysis evaluating the validated tool, dubbed the Functional Assessment…
Discussion
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…
Mutations in the MUC4 gene may be linked to a higher risk of dangerous blood clots in people with paroxysmal nocturnal hemoglobinuria (PNH), a study has found. Researchers believe the mutations may be associated with increased activity in part of the immune system called the complement system. In mouse…
Discussion
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…
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