What is Porphyria

Porphyria is a family of rare disorders related to the way your body makes an important molecule called heme. Some types of porphyria can cause attacks with severe abdominal pain, nausea, and paralysis. Other types cause intense pain, burning or blistering when skin is exposed to sun and some indoor lights. It can take years, sometimes decades to get a diagnosis, and during that time someone with porphyria may be told that their pain and symptoms are “all in their head”.

Porphyria can affect all parts of your life. Beyond the physical illness, having a rare disease can be lonely. Porphyria can make it hard to work or maintain relationships or even spend time outside. Getting a diagnosis or follow up care can be a struggle. We’re here to help.