“Princesses Behaving Badly: Real Stories from History Without the Fairy-Tale Endings” by Linda Rodriguez McRobbie is a pop culture history book. It isn’t a medical or scientific book. So how on earth could it save my sister’s life? The book is about the lives of women throughout history who were…
Discussion
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…
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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