I was diagnosed with myotonia congenita in 1989 – 1990. A lot has changed since then. With the invention of the Internet, there are active communities of folks with myotonia congenita. Meaning, it’s now easier than ever to connect with others who share this condition. If you think you may have it, you can talk about the symptoms you’re experiencing. If you have been diagnosed, you can connect and learn more. Here are some of the more popular communities:Myotonia Congenita Talk
I set up this forum as a place where people can ask questions anonymously – something that was absent from the myotonia congenita community. The nature of Facebook groups is that your name is automatically attached to your post and there’s no real easy way to make an anonymous post. But, there are sensitive topics where an anonymous post might be preferred – understanding how myotonia congenita affects or is affected by alcohol, marijuana, other drugs, sex, etc. So, I’ve set up this forum as a place where people can converse about myotonia congenita anonymously if they choose. You can also register and use a username, which makes it easier to keep track of your posts. There are also no rules regarding what topics are allowed and what topics aren’t. Any questions are allowed. The only real rule is that you must be civil towards one another.
I’ve listed a number of Facebook groups that are generally active and have 75+ members. There are other groups, but there doesn’t seem to be a lot of activity in them.
MYOTONIA Conditions Without Dystrophy
With nearly 2000 members, this is the largest and oldest myotonia congenita group on Facebook. The group has a strict moderation policy and topics like alcohol, drugs and other non-family-friendly topics are off limits.
Several other Facebook groups where topics that are forbidden from the main myotonia congenita group can be discussed.
Thomsen myotonia congenita
Nearly 400 members. This group is specific to the Thomsen variant. This group is private and your posts will not be easily visible to others.
This group has about 140 members. Note that this is a public group and therefore your posts may appear on your timeline and may be visible to friends/family/employers.
A private group that I run with nearly 100 members. It began when several people from the main myotonia congenita group expressed frustration that certain topics were off-limits.
Myotonia Congenita (Deutschsprachig)
A private group with about 80 members. This group is notable for being predominantly in German.
This is one of the oldest communities for individuals with myotonia congenita. Sadly, the forum closed down several years ago due to increased upkeep costs. The posts and comments still remaining and reading them can be useful.