Porphyria was once called the vampire disease because people with the disease become sensitive to sunlight and develop blisters on their skin. Today, this condition is treated with a combination of a high carbohydrate diet and avoiding triggers, such as alcohol and crash dieting, that can precipitate an attack. For attacks, glucose is administered via intravenous line, iron is given and sometimes other medications are used to control symptoms. If you have porphyria, see a dietitian to plan a well-balanced high carbohydrate diet.
Porphyria Explained
The term porphyria indicates a group of diseases that have some symptoms in common. Some of the diseases under this umbrella include acute intermittent prophyria, porphyria cutanea tarda, erythropoietic protoporphyria and congenital erythropoietic protoporphyria . In all of these diseases, prophyrins, or a chemical that helps make up the red blood cells in your body, build up abnormally and cause damage. Porphyria is a genetic disease. The first attack can happen in early childhood, but sometimes a first attack can happen in adulthood. This disease usually comes in attacks and remissions, and different stimuli can trigger an outbreak of symptoms.
Symptoms
Symptoms vary by the different disease of porphyria you have. The symptoms of an acute intermittent prophyria attack include abdominal pain, painful urination, hallucinations, high blood pressure and breathing problems, according to New York University Langone Medical Center. The most common type of porphyria is porhyria cutanea tarda, and the symptoms are sun sensitivity, fragile skin, blisters to the extremities, slow healing skin, scarring and reddish urine in childhood. This type is often not inherited. Erythropoietic protoporphyria symptoms include sun sensitivity, skin redness with no blisters and gallstones. Congenital erythropoietic protoporphyria shows symptoms from birth, is rare, and includes symptoms such as skin blisters, enlarged spleen and anemia.
Diet Planning
One of the treatments for acute intermittent porphyria, hereditary coproporphyria, variegate Porphyria and ALAD porphyria includes eating a diet that is high in carbohydrates and low in protein. The American Porphyria Foundation recommends that 55 to 60 percent of your calories come from carbohydrates. Dieting sometimes causes symptoms of this disease to get worse, so getting enough calories is important. Eating a high protein diet, such as Atkins, can make your porphyria flare up and lead to a hospitalization. Instead, focus on eating a balanced diet with the proper amount of nutrients. If you need to lose weight, consider consulting a dietitian to help you manage your disease and your weight simultaneously. Carbohydrate intake is not a consideration in the other types of porphyria.
Triggers
Some triggers for acute intermittent porphyria attacks in addition to dieting include medications such as seizure drugs or sulfa antibiotics, alcohol, stress, hormonal changes and cigarette smoke. Triggers for porphyria cutanea tarda are iron, alcohol, estrogen and other chemicals or pesticides in the environment. Sunlight is a trigger for both erythropoietic protoporphyria and congenital erythropoietic protoporphyria . Avoiding triggers can help you keep symptoms from coming back. Sometimes, though, triggers are specific to an individual, so keep a diary of foods and exposures to pinpoint what is causing your symptoms.
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