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Porphyria Educational Services

Porphyria Educational Services Bulletin Vol. 2 No. 30 July 23 (and) 30, 2000
FOCUS: Maintaining a Healthy Liver

The liver is a vital organ for everyone, but the liver is especially important for the majority of porphyria patients.

Porphyrin production takes place in the liver. Overproduction of porphyrins during porphyria attacks can and do damage the liver.

To avoid having liver problems in porphyria you need to remember to maintain healthy eating habits.

Fatigue, decreased appetite, nausea, vomiting, and food intolerances are sometimes associated with liver disease. Throughout the progression of the disease, development of ascites (increased fluid in the abdomen), hepatic encephalopathy (disorientation), increased diarrhea (from medications) and edema fluid retention in the feet and legs) may leave you feeling further fatigued and depleted.

The goal of nutritional management of liver disease is to help you maintain or improve your nutritional status, achieve or maintain calories, and appropriate amounts of protein (without contributing to hepatic encephalopathy).

It is always advisable for porphyria patients to have 60 -65% of their caloric intake in the form of carbohydrates, reduced protein, and minimal fat intake.

It may also be necessary to reduce your sodium and fluid intake.

Another very important thing is to avoid all alcohol, inhalation of chemical solvents and toxic fumes, and to avoid the use of all cytochrome P-450 pharmaceuticals.

Your physician may advise you to have a registered nutritionist provide you with a diet individually tailored to meet your nutritional needs and stay as healthy as possible while coping with your porphyria.

It is essential for porphyria patients to also keep active.

The effects of a compromised liver such as malaise, decreased appetite, fatigue, and depression can take a toll on an individual’s ability to perform activities of daily living.

Such reduced activity can lead to a decrease in flexibility, and endurance, and eventually a decrease in cardiopulmonary performance resulting in an increased surgical risk.

A daily program consisting of regular exercise and normal activity can reduce complications and maximize your strength, flexibility, mobility, endurance, and breathing.

All of these areas are of utmost importance in feeling healthy while still remaining a porphyric.

It is important for porphyria patients to be able to care for themself. Keeping healthy is paramount. Being active is also paramount.

Most porphyria patients have active lives. The goal is to provide excellent care and follow up in concurrence with your primary physicians in order to make the length and quality of life appreciable better just by following some good healthy lifestyle management.

Eloise WIlson, [AIP] , MNS, RN