Seasonal recall bias — when a person’s memory of a previous time of year is distorted by the way they feel in the present — may lead erythropoietic protoporphyria (EPP) patients to remember their summer symptoms as more severe and their treatments as less effective when they are describing…
Discussion
An experimental oral therapy that protects sensitive skin from painful reactions to sunlight is on track toward potential approval in the U.S. The U.S. Food and Drug Administration (FDA) has agreed to review an application seeking approval of the experimental oral therapy dersimelagon as a treatment for two types…
Discussion
I’m usually good at keeping secrets, but the surprises coming up at Porphyria Palooza have me bursting to share everything. Just ask my husband, our three sons, and anyone on the team at the United Porphyrias Association (UPA), where I serve as president. They’ve all watched me struggle to…
Discussion
A young woman with tuberculosis and previously undiagnosed acute intermittent porphyria developed severe symptoms after starting standard antibiotics but improved with hemin and a modified regimen using medications considered safer for porphyria, according to a case report. Tuberculosis is an infection caused by the bacterium Mycobacterium tuberculosis. The woman’s…
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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