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…
Treatment with the investigational oral therapy bitopertin significantly reduced protoporphyrin-IX (PPIX) levels and was generally well tolerated in adults with erythropoietic protoporphyria (EPP), meeting the main goal of the Phase 2 AURORA clinical trial. Because toxic PPIX buildup is a major driver of EPP symptoms, the reductions seen in…
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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