One of the toughest questions I’ve faced with paroxysmal nocturnal hemoglobinuria (PNH) isn’t if my treatment is working. It’s whether the symptoms I continue experiencing are left over from the disease or whether I’ve simply become accustomed to not feeling well. When you live with a rare chronic illness…
Discussion
Most adults with paroxysmal nocturnal hemoglobinuria (PNH) who switched from standard C5 inhibitors to Fabhalta (iptacopan) saw their hemoglobin levels rise, remained free from blood transfusions, and reported less fatigue after six months of treatment, according to Phase 3 trial results. The open-label Phase 3b APPULSE-PNH study (NCT05630001) was designed…
Discussion
Extensive clotting in the skin’s small blood vessels, known as dermal thrombosis, was identified in a 44-year-old man who suffered multiple strokes and was later diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), according to a case report from India. Researchers noted that “prompt recognition of this unusual PNH-related skin thrombosis…
Discussion
If you asked someone what a survivor looks like, they might picture someone standing on top of a mountain, hands raised, smiling because they finally made it through the storm. They might imagine strength as looking loud, fearless, and untouchable. But as someone living with paroxysmal nocturnal hemoglobinuria (PNH),…
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