Note: This column describes the author’s experiences with various medications and therapies. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Dear diary, I am frustrated. I am tired. I don’t feel good. I am 31 years old, but I am…
A recent report described the case of a woman with acute intermittent porphyria (AIP) who experienced a rare complication called gonadal vein thrombosis (GVT), a blood clot that forms in veins that drain blood from the reproductive organs. The symptoms initially raised concerns for an AIP flare, so clinicians…
Clinicians have identified undiagnosed cases of acute hepatic porphyria (AHP) among people with suspected Familial Mediterranean Fever (FMF), an inherited inflammatory condition with nearly identical symptoms, a study reported. While the main manifestation of both conditions is sudden abdominal pain, symptoms exclusive to AHP were neuropathic, such as…
An 11-month-old girl developed symptoms of variegate porphyria (VP) after receiving a liver transplant from her mother, according to a case report from Germany. The researchers said the case highlights how transplanted organs can sometimes carry hidden risks. Both the child and her mother carried a mutation linked to VP,…
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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