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