May 18 is Global Porphyria Day, and advocates worldwide are planning several initiatives to raise awareness of this group of genetic diseases — and improve understanding of the challenges of living with porphyria. “As a rare disease, porphyria is often unheard of, unseen and misunderstood,” the United Porphyrias…
A 71-year-old woman in China with type 2 diabetes experienced three years of unexplained abdominal pain and psychiatric symptoms until she was ultimately also diagnosed with variegate porphyria (VP), a type of the rare genetic disorder that’s usually marked by severe pain around the abdomen. Because her symptoms did…
Discussion
“You can tell everything you need to know about a man by the way he shakes your hand. Eye contact and a firm grip show trust and respect. You can count on that person.” I have held on to my dad’s advice for 27 years now, and while I’ve found…
Among people with acute intermittent porphyria (AIP), high levels of two compounds in urine are linked to increased odds of occasional or recurrent attacks, with levels of one, called aminolevulinic acid or ALA, also tied to a greater likelihood of hospitalization. That’s according to the findings of a new…
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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