JOIN SOCIAL MEDIA
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, it is important 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. A “Private ” group, it currently has over 2,400 members. It is actively managed with usually dozens of posts and comments every day.
The “McArdle Parents – IamGSD” group is a ”Private” group for parents of children with McArdle's, discussing the specific issues facing children and young people with McArdle’s. Members may speak freely without their children, or children’s friends, reading posts. Membership is open to parents or guardians, close family members or those with an expert contribution.
The “Ketosis in McArdle’s – IamGSD” is a “Private” group. It 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 have followed with more in progress and being planned.
The “Tarui Disease GSD7 – IamGSD” group is a ”Private” group for anyone affected by GSD7 - Tarui disease. This mGSD is very similar to McArdle’s, but there are far fewer people diagnosed, so this is a small group with around 120 members.
The “Glycogen Storage Disease 9d – IamGSD” group is a ”Private” group for anyone affected by GSD9d, the muscle subtype of GSD9 (the other subtypes are liver GSDs). This is an extremely rare condition, so to date there are only around 30 members.
The group “McArdle deutsch – IamGSD” has existed since 2014 and now has over 160 members from Germany, Austria and Switzerland. Like its English-speaking big sister, it has recently become a private group in which the members can exchange comments freely and undisturbed.
Our Instagram account is helping to raise awareness of Muscle GSD. Watch out for our posts.
There are lots of useful tips on our YouTube channel, originated by AGSD-UK but now taken on by IAMGSD.
The IamGSD YouTube channel.
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.
The AGSD-UK YouTube channel
The AGSD-UK YouTube channel has a playlist of videos on McArdle disease.
The Euromac Registry YouTube channel.
Euromac has an introduction to McArdle disease on its own YouTube channel.
Watch out for tweets on our rather inactive IAMGSD twitter account: IamGSD@musclegsd.