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Information for patients, their families and helpers

Diet: Basic principles

1. Avoid all foods known to contain phytanic acid and free phytol

Phytanic acid is found in foods obtained from animals which live mainly on green plants and also in fish. In the UK, this typically means beef, lamb, goat, fish, milk and milk products, and fish oils (often contained in processed fats).

2. It is very important to eat sufficiently well to prevent loss of weight

When the weight falls body fat stores are used for energy and the stored phytanic acid is released into the blood, causing problems. This may even happen over a short timescale, so a regular eating pattern of three meals a day, plus snacks if necessary, is better than long periods without food followed by a large meal.

3. Aim to eat a variety of foods, so as to obtain all the nutrients needed for overall good health

In this adult Refsum's disease patients are no different from the rest of the population.

Next: Low-risk, medium-risk and high-risk foods

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Page last updated 26 June 2006