ive just read Karen's post and hope that she-you will get diagonosed soon. im just wondering, does anyone know how we can raise awarness, like charities and things? please be in touch soon!!!!! void(0);
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.