The links on this page outline people’s personal accounts of living with myotonia congenita. I’d love to add your story to this page. If you’re interested in having it added, please send me a message through the contact form describing things like: a) your experiences growing up with myotonia congenita b) the process that you took to get diagnosed c) how myotonia affects your life and d) what coping strategies and medications have worked for you.
The following four accounts appear on myotoniacongenita.com:
Ask Me Anything on Reddit
Reddit is a social media platform. Several years ago, videos showing “fainting goats” (goats who suffer from myotonia congenita) were popular online. Several redditors have posted AMA’s where people can ask questions about it’s like to live with “fainting goat syndrome”.