Many adults with acute intermittent porphyria (AIP) reported using cannabis and complementary and alternative care, including chiropractic and acupuncture, for symptoms or general well-being, a study found. However, more research is needed to determine whether these approaches are safe and effective. The U.S.-based study, “Complementary and alternative medicines…
Discussion
A friend recently sent me a grainy image taken 10 years ago at Camp Sundown, a camp for children with rare diseases that make sunlight dangerous and painful. In the photo, my friend and I are sitting on top of a car with a few other moms. Back then, we…
Discussion
Scenesse (afamelanotide), an injection treatment that helps prevent sun-related skin damage in adults with erythropoietic protoporphyria (EPP) — a type of porphyria marked by skin hypersensitivity to sunlight — is now approved in Canada. Health Canada cleared the therapy, given as a subcutaneous, or under-the-skin, injection, for use…
Discussion
A young woman whose recurrent muscle weakness and breathing problems were long mistaken for myasthenia gravis, a neuromuscular disorder, was ultimately diagnosed with variegate porphyria (VP) after advanced genetic testing uncovered a disease-causing mutation, a case report shows. “In the described case, the patient’s atypical clinical manifestations led 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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