Parents of children with erythropoietic protoporphyria (EPP) or X-linked protoporphyria (XLP), two disorders marked by sunlight sensitivity, described in a survey the challenges their kids faced throughout childhood and into adulthood. Those included isolation, frustration, and difficulty understanding the condition, as well as educational barriers for young children, social pressure…
Discussion
My sister, Mimi, and I both live with porphyria, a rare disease that can cause debilitating attacks and require significant medical care. For me, porphyria can mean severe abdominal pain, nausea, body aches, and a range of other symptoms that can make everyday life difficult. Mimi experiences many of…
Discussion
A specialized, sun-safe weekend camp helped children and young people with rare light-sensitive disorders safely experience the outdoors and connect with peers facing the same daily challenges, according to a recent study. The Alfresco Residential camp, held at Thorpe Woodlands in Norfolk, U.K., in late 2024, gave young people…
Discussion
My heart is so full, as is my head! Just a few weeks have passed since we held Porphyria Palooza, a gathering organized by the United Porphyrias Association (UPA), where I serve as president. This year’s event brought together patients and caregivers of every type of porphyria, as…
Becoming educated and informed about porphyria is a good first step. Here you’ll find general information about the disease, including the types, diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of some of our columnist’s words of wisdom to help you along on your porphyria journey.
There is no cure for porphyria yet, but there are therapies that can help manage the disease. Here you can find more information about some of the approved treatments for porphyria.
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