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.
Support from Coordinator
The McArdle’s Coordinator can assist in many ways. This voluntary role is very varied but includes support to members by providing information and answering questions; acting as a patient advocate; organising the McArdle workshop at the annual conference and the annual walking course events. See the next tab for details of the Coordinator.
Contacting other people with McArdle’s
People who are newly diagnosed with McArdle disease usually have a great number of questions. Sometimes it is appropriate to put patients in touch with each other because either they live in the same area or have similar circumstances. This is done by the Coordinator with the advance approval of both parties.
Map of people with McArdle’s
We maintain a map of people in the UK affected by McArdle’s, to help facilitate finding peer-to-peer support when it is desired. You can ask to have your name and a choice of contact information added to the map. Click on the map to visit the page for details, or contact the Coordinator.
International Association for Muscle Glycogen Storage Disease
The IAMGSD is a patient led body whose mission is to improve the lives of all those affected by all of the muscle GSDs. They have extensive information about McArdle’s on their web site and are producing new publications. Click on the logo for their web site at www.iamgsd.org.
The UK McArdle Clinic
Many patients are diagnosed at hospitals around the UK where, due to the rarity of the condition, the consultant concerned has few or no other McArdle patients. The support on offer is therefore often very limited. However, patients may ask their GP to refer them to the UK’s national McArdle Clinic. At the clinic they will receive a broad range of medical support, be kept up to date with the latest information and be able to meet other patients. For full details please see the tab ‘McArdle’s clinic’ under ‘Diagnosis & management’.
About so much more than walking, these annual events are a great opportunity to meet others with McArdle’s, swap experiences, learn the best techniques for managing this condition and expand your boundaries in a safe, understanding and supportive environment. People from 15 countries have attended. Click on the image for a 4-minute video of testimonials.
Workshops at the annual conference
At the AGSD-UK annual conference, usually held on a weekend in October, we have McArdle workshops. This is an excellent opportunity for patients to meet each other and get together socially. There are many sessions, but the workshop usually includes a presentation on a subject relating to research or therapy and is given by a medical professional. Previous talks have included: gene therapy research in Australia; leading McArdle physicians from New York and Copenhagen; and exercise physiologists from the British Olympic Association. We also have an update on the McArdle Clinic and research at the Centre for Inherited Neuromuscular Disease. We have a patient-focused session when we talk about issues we have in common and share experiences.