Paige:

It's such a rare disorder that a lot of people would not see the point in becoming aware of it and most people would likely forget about it, including doctors.

However, on the Facebook myotonias group there is a rough draft of some text for a pamphlet that members can print out to educate their friends and family about it.

Type of Myotonia: Becker

Country: USA

Paige, I would suggest getting involved with this group:

Muscular Dystrophy Campaign

Myotonia Congenita is one of the conditions they cover.

Jan

Type of Myotonia: Thomsen's

Country: USA