Diet and Exercise

Pompe Disease – Diet

It’s a good idea for Pompe patients to follow a sensible, high-protein / low-carbohydrate diet, to ensure that our bodies do not have extra problems to cope with, due to poor nutrition.

Healthy eating and regular exercise, along with treatment, are important for Pompe patients.

However, there are many reasons why some patients may not be able to take adequate nutrition, and there are several ways of helping with that. Please refer to the resources page for more information available for download.

Sometimes, in very severe cases of Pompe disease, patients no longer have the stamina to eat enough to sustain the body’s needs, or have lost too much weight. In these cases it may become necessary for the patient to have a gastrostomy. This is an external surgical opening into the stomach, which allows for supplemental tube feeding, so that complete nutrition can be provided.

For more Pompe specific information on diet and nutrition, including an informative video click link to US site below.

(please note the USA has different rules about patient communication to Australia)

https://www.pompeandyou.com/create-your-plan/#how-nutrition-fits-into-pompe-plan

A guide for people living with Pompe Disease- Gastrointestinal Issues

Download the latest version of Diet and Nutrition by the International Pompe Association.

Pompe Disease- Exercise

“If you don’t use it, you’ll lose it!” This applies especially to Pompe patients.

Regular exercise will help your muscles and will benefit your whole body. It will also make you feel better about yourself.

Light to moderate aerobic exercise, such as walking, will help to strengthen the muscles. Some daily light stretching and regular movement helps us to stay flexible, will help to prevent muscle stiffness and will improve muscle tone. Some of our members do at least some walking every day, others do Pilates exercises, use a treadmill, or follow an exercise routine set by their physiotherapist.

Exercise should never be extreme or stressful, but should be within comfortable limits.

This video series  contains 59 short videos in the series. Use the >> button at the bottom of the video to scroll to next video.

Download the latest version of Exercise and Physical Therapy by the International Pompe Association.

Remember, too little exercise may not benefit you as you would like. Too much can hurt you and can actually damage your muscles.

All exercise should be done under the guidance of a qualified professional, such as your GP or a physiotherapist, who can set up an exercise program to especially suit your needs.

Note: Always seek the advice of your doctor before starting on any diet or exercise regime.

IMPORTANT: This information is intended to provide general information in regard to the matter covered. It is provided as a public service by the Australian Pompe Association. Medicine is constantly changing and human error and changes in practice make it impossible to certify the accuracy of such complex material. Confirmation of this information from your doctor or medical practitioner is required.