Community Groups

Community groups are central to everything that happens within the Pompe Support Network. Individual groups discuss their own experiences or share views on published research, news items, or anything related to the group's subject.

This section describes the current groups and their discussions, projects and proposals. We positively encourage suggestions for new groups that may lead to improvements in the health and wellbeing of the Pompe Community.

Because Pompe is so rare and still not fully understood, experience within the Pompe community is of critical importance. We are often asked for advice about living with the condition by companies developing therapies, and by researchers trying to develop guidelines for diet and exercise. So the knowledge we hold can also drive research and the development of such guidelines in many aspects of life.

Diet and Nutrition

We always turn to qualified dietitians and nutritionalists for advice and they are a very important source of safe and published information. But we know that experience within the community can sometimes question the scientific understanding and we need to work with the professionals to develop dietary guidelines that work across the wide spectrum of Pompe community.

The best advice is often to eat a well-balanced diet, perhaps biased towards protein to support muscle repair. Diets should also try to maintain a healthy weight as losing weight through exercise is not easy.

Some individuals have experienced other dietary regimens, either for cultural or experimental reasons, or completely by accident. When those experiences show clear benefit; we would like to consult with professionals and develop research proposals to test their suitability for all.

More about Diet and Nutrition
Facebook group for Diet and Nutrition

To join the Facebook group, you must first join the Pompe Support Network

Exercise

There are a few rare examples, within this ultra-rare community, of people who push themselves to extraordinary feats of physical endurance. We know of one gentleman in the USA who ran a Marathon recently, and another in South Africa who regularly competes in endurance cycling events. Their experiences would seem to suggest that exercise is not quite so damaging as current advice to patients would suggest. But we must all be careful not to over-strain our weaker muscles.

More about Exercise
Facebook group for Exercise
To join the Facebook group, you must first join the Pompe Support Network

Mental Wellbeing

Mental wellbeing is highly topical at the moment, especially in the UK; our NHS has developed a useful guide that you may like to explore. It begins with the evidence based Five Steps to Mental Wellbeing, many of these these can be expanded to include physical wellbeing.

More about Mental Wellbeing
Facebook group for Mental Wellbeing
To join the Facebook group, you must first join the Pompe Support Network