290 people with Porphyria have joined the DiseaseMaps community map. They have shared 349 first-person answers and 9 stories about living with the condition.
Hello I am from Pakistan. When I was born, I was completely all right. After 2 months when my mother cut my nails, there was some water. My parents checked with a skin specialist who said that I had disease of skin, (Congenital erythropoie...
22 people with Porphyria have taken the SF36 survey. Mean of Porphyria is 1581 points (44 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey
