http://www.raredr.com/news/porphyria-day-in-life
Porphyria - A Day in the Life

Desiree Howe




Rare Impact Award winner Desiree Howe of the American Porphyria Foundation describes the pain and frustration often associated with porphyria.

The porphyrias are a group of rare metabolic diseases in which  porphyrins accumulate and lead to neurological symptoms and/or skin problems.


Acute porphyrias primarily involve the nervous system and are often associated with severe pain as well as other non-specific symptoms (abdominal pain, neuropathy, vomiting, metnal disturbances) that make diagnosis problematic.  Cutaneous porphyrias usually involve the skin. Exposure to sun can lead to intense pain and/or blistering.

For more information, visit www.porphyriafoundation.com or rarediseases.org




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