“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…
Discussion
I love my job! It is hard to adequately express how blessed I feel to be part of the porphyria community, to lead the United Porphyrias Association, and to advocate on behalf of patients and caregivers. I get to connect with expert physicians, support patients, curate meaningful…
A 16-year-old boy with acute intermittent porphyria (AIP), who first had abdominal pain and later developed seizures and was found to have a rare brain condition involving swelling, gradually recovered with a high-carbohydrate diet, anti-seizure medications, and by avoiding known triggers, according to a report from India. “Raising clinical…
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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