This section tells you about the Pompe Support Team, and has information provided by them which will be of particular interest to newly diagnosed Pompe people.
From the experts… patients!
In 2014 the Pompe Support Team started collecting together all the suggestions they could from the experts in Pompe disease… the patients themselves.
Over many months, mainly using Facebook, they gathered well over 140 different tips. They were reviewed and gathered together to create a handy booklet that was sent to all AGSD-UK members with GSD2.
It was a great success. It has been translated in to Italian, Dutch and German. We have sold many copies around the world, especially to the USA, Canada and Australia.
The 101 Tips for Pompe – available free to all diagnosed with Pompe in the UK.
Second booklet planned
We are now creating a second Top Tips booklet and we would like your ideas.
Recent suggestions include:
- Try a sugar free lozenge at night-time, designed to help keep your mouth hydrated when using non-invasive ventilation such as a BiPap.
- If your Bipap creates a nasty red mark on your nose, get a small amount of reusable adhesive silicon gel matting (you can buy it online). Cut a thin strip and place it under the mask edge.