A study in mice suggests that genetic makeup and diet may influence a person’s susceptibility to developing sporadic porphyria cutanea tarda (PCT), the most common form of porphyria, after exposure to environmental triggers. When researchers exposed mice to excess iron, a known trigger of PCT, only some developed…
A woman with acute intermittent porphyria (AIP) developed lasting nerve damage after repeated disease attacks, resulting in distinctive hand changes known as “claw hands,” according to a case report from Taiwan. In this condition, the fingers curve into a claw-like position due to damage affecting the nerves that control…
Discussion
Shortly after I was diagnosed with acute intermittent porphyria (AIP) in October 2020, I discovered the American Porphyria Foundation’s website, which is dedicated to supporting patients with porphyria. The site offers valuable information about the condition and its approved treatments, as well as a store featuring…
New drug candidates being tested for erythropoietic protoporphyria (EPP) cannot yet be reliably compared with Scenesse (afamelanotide), the only approved treatment for adults with the disease, because their clinical trials are designed in very different ways, according to a new analysis. “Efficacy and safety of currently investigated treatments…
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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