A wealth of information and guidance is available online and in printed form, plus there is support from the McArdle’s Coordinator and opportunities to meet others affected by McArdle’s.
First line of support from the McArdle’s coordinator
The coordinator for McArdle’s is Andrew Wakelin
Everyone in the UK diagnosed with McArdle’s should register with Andrew to be kept up-to-date with developments.
Contact him via:
Email him here.
Or telephone: 01597 860686
Andrew on day 5 in the Dolomites.
What he does
This is a voluntary role to co-ordinate the AGSD-UK’s activities in regard to McArdle’s. He is the principal contact for the public, members and the medical profession.
Much of his time is spent supporting people who are seeking a diagnosis or are newly diagnosed.
He works on developing techniques to manage the condition and on expanding the support literature. He strives to help other people with McArdle’s improve their life experience of the disease, with a focus on those who are worst affected.
His efforts range from helping someone to get out of their wheelchair or to tackle stairs, through to leading a group of McArdle people on a 7 day mountain walking challenge in the Italian Dolomites.
The team on Walk over Wales, Andrew 2nd left.
Andrew’s own McArdle story
Although Andrew had symptoms from age four he didn’t get a diagnosis of McArdle disease (GSD5), until age 30. He had no help for another 20 years until a friend’s internet search led him to the McArdle Clinic in 1999 and his DNA confirmation (homozygous R50X, just like so many in the UK).
He was appointed the McArdle’s Co-ordinator in 2004.
Andrew is less badly affected than many and feels this may be down to having minimised anaerobic activity and kept active with aerobic activity from his early years.
Andrew lives in mid Wales. Using techniques he has developed to cope with his McArdle’s he has climbed all 188 of the Welsh mountains over 2,000 feet, and mountains around the world. He stopped 200 feet short of the 19,340 feet summit of Mount Kilimanjaro blaming altitude sickness rather than his McArdle’s.
Andrew organised and led the “Walk over Wales” awareness- and fund-raising event in 2010 and has subsequently led annual walking courses for McArdle people.
A graphic designer, Andrew was for 25 years managing director of a design company he built from scratch. Then for 10 years was Chairman of a company developing software for the design, advertising and publishing industries. Now aged 69 he is retired and devotes his time to supporting people with McArdle’s around the world.
An ex-paraglider pilot, instructor and world record holder (long superseded), Andrew was for many years on the UK governing body for paragliding including as Chairman.
Andrew served as a Trustee and Chairman of AGSD-UK from 2009 to 2014. He is a member of the steering committee of Euromac and a board member of the International Association for Muscle Glycogen Storage Disease (IamGSD). He is the author of books, booklets and leaflets on McArdle disease, some of which are now produced in eight languages.
There is support from…
A long list of McArdle people share the load with the coordinator in various roles, and the list is growing. At conferences, on the walking courses, on the Facebook groups and at the McArdle’s Clinic.
If you are interested in helping, please get in touch via the “Message us” page.