It’s been about eight years since Hannah, a dancer and dance teacher, experienced her first acute hepatic porphyria (AHP) attack, but she can still clearly recall the intensity of the sharp stabbing sensation in her abdomen. The overwhelming pain, as well as fatigue, dizziness, and nausea, kept returning, their…
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The seven-day Porphyria Awareness Week campaign kicks off May 12 to spread the word about porphyria and culminates with Global Porphyria Day on May 18, a Sunday. The theme of this year’s observance is “Think Porphyria,” according to the American Porphyria Foundation, which is joining forces with…
Liver disease, a potential complication of erythropoietic protoporphyria (EPP), may increase healthcare needs, raise disease burden, and negatively impact mental health, according to a new study by U.S. scientists based on self-reported data from patients. People with liver disease also said that their EPP had a greater impact on…
Sometimes hope feels heavy. In the past several months, the porphyria community lost several beautiful souls. They were different in age, type of porphyria, and geography, but all were taken too soon. As I sit at my desk at the United Porphyrias Association office (where I serve…
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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