After the diagnosis we are ready with a great deal of information, support, friendly contacts and signposting to other services where needed.
Your Pompe resources
We’re building a new range of information resources with practical help on different aspects of day to day life with Pompe and tips from people affected.
Just click on the relevant links or get in touch if you’d like us to send hard copies and a folder to store these in.
Look out for additional sheets on Coming to terms with diagnosis, Discussing treatment options and Nutrition in the coming months and let us know what other topics you’d like included.
Glossary
You may find our glossary of terms very helpful in getting to grips with the medical terminology. When you see words such as glycogen, metabolism and rhabdomyolysis underlined with a dotted line, hover over the word and our glossary will display the meaning for you.
Infantile-onset Pompe disease
- A Guide to Infantile Pompe disease (2013) More info
- Pompedoo (2017)
- IOPD – A guide for parents of primary age children and schools (2017)
- Super Pompe Powers
Late-onset Pompe disease
- 101 Top tips for living well with Pompe disease (2017) More info
- Medical overview booklet for professionals (2017)
- Mental Wellbeing and Pompe Disease booklet (2021)
- Risk Alert Card for respiratory failure (2017) More info
- Pompe – The Inside Story (2017)
Includes: Breathing and Pompe leaflet
And: Physiotherapy and Pompe leaflet - Travelling with ERT – Sanofi Genzyme More info
- IPA Connections – a series of leaflets from the International Pompe Association
Go to the IPA web site.
Mental Wellbeing and Pompe Disease booklet
A collaborative project including information from a clinical nurse specialist, a Pompe care advisor and the UK Pompe patient community. Ideas and suggestions are shared to enable people to create their own ‘mental health tool kit’ along with guidance on how to navigate services and seek out the most suitable help.
The booklet is available from AGSD-UK, or download a free PDF.
Understanding Late-Onset Pompe Disease in Parents
An educational video by Medikidz Comics, to help children understand their parent’s Pompe disease. From Sanofi Genzyme.
Go on a journey to Mediland with Xavier and Jovanni, whose dad, Princeton, has Pompe disease, as they join the Medikidz to learn about Late-Onset Pompe Disease in parents. Understand what GAA enzymes are, how they work, and how missing some or all of them may cause Pompe Disease.