Myotonia Congenita Info

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Personal Accounts

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:

  • Jackie from New Jersey
  • James from Atlanta
  • Lois from San Diego
  • Jody from Minnesota

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”.

  • I have Myotonia Congenita, the “fainting goat disease”. AMA! 
  • Mod Note: Myotonic (aka “Fainting”) goats falling over is not parkour.
  • As Requested: I have the same condition as fainting goats (Myotonia Congenita) AMA

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