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.
Multiple on-line support groups and videos
Social media for McArdle’s
In today’s interconnected world there is a huge amount of information and support available on-line for people affected by McArdle’s. In addition to this web site and that of IamGSD, there is a YouTube channel, Instagram accounts, Twitter feeds, and more.
Facebook is the main social media for McArdle’s networking. There are other social media platforms but none that we have found have a critical mass of McArdle’s users, so posts tend to go unanswered.
There is a wide range of Facebook groups serving people with McArdle’s. Listed below are the main ones. These have most posts in English. There are other groups where posts are largely in other languages. There are others, including a myriad of groups covering all GSDs, where it is less easy to identify what is relevant to McArdle’s.
This is the main “public” group and now has over 2,000 members from all around the world, largely from English-speaking areas such as UK, North America and Australasia. It is a great way to ask a question and find other people who have already experienced the same issue. Remember that these people are not medical professionals but generally have the disease themselves. That can be very helpful in swapping experiences, but take care not to treat someone’s personal opinion as medical or scientific fact. There are also public groups for McArdle people posting in German and French, and maybe other languages.
This is a more specialist “closed” group for parents of children (including grown up ones) with McArdle’s. It discusses the specific issues facing children and young people. This group is private so that members may speak freely without their children, or their children’s friends, reading the discussions. With greater numbers of children being diagnosed than ever before, this is a valuable resource. Membership is open only to parents or guardians, other close family members or those with an expert contribution to make.
“Ketosis in McArdle’s”
This is a special interest “closed” group for people with McArdle’s who wish to develop the experimental therapy of ketogenic diet and nutritional ketosis. There are over 600 members sharing their experiences and swapping tips. This dietary approach now has more adherents anecdotally reporting significant benefit than all previous studies combined, but as yet very little in the way of scientific evidence.
IamGSD YouTube channel
There is a YouTube channel dedicated to McArdle’s and increasingly other muscle GSDs. There are several professionally produced videos including an introduction to the disease and two about the walking courses. Then there are many shorter clips about tips for managing McArdle’s. The channel was originated by AGSD-UK in 2010. It is now managed by IamGSD with contributions from Euromac. Total views to date exceed 19,000.
Instagram and Twitter accounts
These are much less frequently posted to than the Facebook groups, but may be useful.
First of all watch out for McArdle posts on the AGSD-UK’s own Twitter account, “agsduk”.
Then watch out for posts on IamGSD’s Instagram account, “i.am.gsd”. These can include learning points as well as photos from courses and conferences.