Online social media has revolutionized peer support for ultra rare diseases. Those affected around the world can find each other, exchange experiences and organize into support networks.
IAMGSD recognizes Facebook groups as currently the pre-eminent format for responsive peer support. We wish to see high standards in these groups, with multiple Admins, active management, user guidelines and a commitment to sound information. We believe the listed groups meet these standards. The postings are predominantly in English, but any language may be used.
Where groups do not meet these standards, great caution should be exercised.
Generic GSD groups
In addition there are groups covering all GSDs including the conditions we cover, for example “GSD Net” which started the online support revolution with a mailing list server back in the 1990s. When using generic groups, always remember that the hepatic and muscle GSDs vary enormously.
The “McArdle’s Disease – IamGSD” group, started in 2009, is by far the largest connected group there has ever been for any muscle GSD. An “Open” group currently with over 1,800 members. It is actively managed with usually dozens of posts and comments every day.
The “McArdle Parents – IamGSD” group is a ”Closed” group for parents of children with McArdle's, discussing the specific issues facing children and young people with this condition. This group is private so that members may speak freely without their children, or their children’s friends, reading the discussions. Membership is open only to parents or guardians, other close family members or those with an expert contribution to make.
The “Ketosis in McArdle’s – IamGSD” group is a special interest group for people with McArdle‘s who wish to explore and develop the experimental therapy of nutritional ketosis. It has led the way in this dietary approach and research trials are now starting to happen.
There are lots of useful tips on our YouTube channel, originated by AGSD-UK but now taken on by IAMGSD.
We have some professional videos on the walking courses. There are also plenty of clips on such topics as “second wind”, steeping up, and zig-zag. Watch out for more in the coming months.
Euromac has an introduction to McArdle disease in its own YouTube channel.
The IamGSD YouTube channel.
The Euromac Registry YouTube channel.
Watch out for tweets on our IAMGSD twitter account in 2018: IamGSD@musclegsd.