Free guide · Scarlet Beast En español →
Porphyria: attacks of belly pain and weakness, or skin that blisters and burns in the sun, the types, what sets off an attack, the tests, treatment, and food
For anyone told they have, or might have, porphyria, for anyone with attacks of severe belly pain, dark urine or weakness that no one has explained, for anyone whose skin blisters or burns in sunlight, for the parent of a child with it, and for the people who help them. It passes on, by name, what the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK, part of the NIH) says: the two groups of porphyria and their signs; who is more likely to get them, the genes, what sets off an attack, and the complications; how doctors find them; treatment, from the hospital to the sun; and food. It builds the questions to ask and prints a card. Nothing is saved.
Right now
- An attack of severe belly pain, vomiting, weakness or confusion? NIDDK says that without early treatment an attack may become more severe and even life threatening, and that doctors most often treat attacks in a hospital. Get care the same day and say you have porphyria (ours).
- A seizure, trouble breathing, weakness that spreads, or confusion or seeing or hearing things that are not there? Call 911 (ours).
- At the end of your rope, or having thoughts of suicide? Call or text 988, any hour, free (ours).
More help
- The blood and the liver on this site: Anemia · Hemochromatosis (too much iron) · Cirrhosis · Heart, blood and hormones: find the right page.
- Around it: Hepatitis · Quit smoking · Caring for someone.
- For you: My medicines · Low-cost health care · Get ready for your appointment. In an emergency: Help right now (988, 911). All our free tools.
Your heart, blood pressure, blood sugar, thyroid or blood, and not sure this is the right page? The pages on this site for a heart attack or stroke, blood pressure, AFib, heart failure, cholesterol, diabetes and prediabetes, the thyroid, anemia, sickle cell and menopause, on one list.
Other guides on this site that go with this page
Free to read. We chose these ourselves; no professional did. Each guide was written with AI and has not been reviewed by a professional. They are general information, not advice.
- Aplastic anemia and MDS: when the bone marrow makes too few healthy blood cells, the signs, who gets them, the tests, transfusions, a stem-cell transplant and other treatment, and food: aplastic anemia and MDS: the signs, who gets them, the tests, transfusions, a stem-cell transplant, and food.
This page and its wording were written with AI (Claude) for Scarlet Beast (our AI policy). No doctor or nurse has reviewed it. The facts were read on October 22, 2026 on NIDDK’s (NIH) page Porphyria, every section, last reviewed in July 2020. Ours: the 911 and 988 lines; getting care the same day with the pain of an attack; telling every doctor, dentist, pharmacist and anesthesia team about the porphyria; asking before you stop or change a medicine; one list of every medicine, supplement and herb; asking how to protect the skin; when to call the care team soon; the questions to ask; the card; the links to our other pages; and the order of the steps. What we left out: its section on clinical trials, its references, its pictures, and the other pages it links to, which we did not read. It names no medicines, and neither do we. Nothing you tick or type here is saved or sent.