After the diagnosis we are ready with a great deal of information, support, friendly contacts and signposting to other services where needed.
Help without judgement
It might seem very easy to talk about ‘support’. For some people it is not so easy asking for it or receiving it, even in really difficult circumstances.
At AGSD-UK everyone affected by GSD2 will find help without judgement. Our firm belief is that everyone is trying hard to live the best possible life they can.
If we can share ideas, help to fill in forms, solve problems together and learn from one another then life’s obstacles become a little bit easier for all.
AGSD-UK works according to principles of wellbeing, we believe that everyone can achieve, contribute, learn and stay connected in their community.
Specialist Care Advisor
The AGSD-UK Specialist Care Advisor (SCA) works full time around the UK. The service offers non-medical help.
A lot of work is done by phone, but she also visits the Highly Specialised Centre clinics and liaises with medical staff there.
Home visits can easily be arranged too. Jane Lewthwaite has met or spoken with most people with Pompe in the UK so it is always worth phoning for a chat. Your personal information is treated confidentially. Her work can include a very wide variety; organising family days and regional meetings, helping to connect people for local help and applying for grants. She works with the Pompe Support Team and helps to develop new materials and leaflets. Even if your question seems odd or unusual it is worth phoning, she can tell you whether it is a common issue and what solutions have been found.
The GSD2 coordinator is a voluntary role filled by Charity Director Allan Muir. As the GSD2 coordinator Allan joins with the support groups for the other Lysosomal Storage Disorders (the LSD Collaborative) to work on the areas where Pompe disease overlaps with others and where there are shared interests.
Allan meets with the other GSD coordinators once or twice per year to discuss feedback from different groups with different GSDs.
A group of volunteers called the Pompe Support Team
This friendly group have, or are affected by, late-onset Pompe disease. They got together to provide help for people who are newly diagnosed. They also work on publications and leaflets, great ideas to help share information. Their mantra is ‘knowledge is power’.
This team meets a few times per year although they live in different parts of the country. They organise meetings, get-togethers and occasionally have a social evening too.
The PST provide a welcome session every year at the AGSD-UK conference, this is especially to help make introductions for people who have not been before.
International Pompe Day is April 15th every year and the PST often use this day as a focus for events or to promote awareness.
PST members often accept speaking engagements to talk about living life with Pompe. This might be for the local WI as a fundraiser or it might be to the Wales Thoracic Society to highlight better diagnosis of Pompe disease. Ben Parker visited San Antonio in Texas to speak to the Audentes Patient Involvement group. Download his report here.
Making contact with them is easy – by phone on 0300 123 2790, or email the team here.