After reading so many similar stories to my own on this website, I am very convinced that an organized effort needs to be made to help educate pediatricians about MC and related conditions. No child should spend their youth being told nothing is wrong with them or that they just need to stretch more when there is a nameable and identifiable condition.

I have a few ideas of my own, but would much prefer to kick ideas around with some folks. Would anyone like to exchange emails and do some brainstorming on this?

-Ryan

Type of Myotonia: Thomsen's

Country: Colorado, USA

Ryan:

It's a nice idea and you certainly should pursue it, but also keep in mind that myotonia congenita is just one of thousands of rare disorders, most of which most doctors will never see in a patient, and doctors have to remember an amazing amount of information as it is.

That being said, I've never held it against my childhood doctors that they didn't know what was wrong with me, but I'm still baffled why they never bothered to refer me to a neurologist when my problem was clearly within that realm because I'm sure a neurologist would have caught it instantly.

Type of Myotonia: Becker

Country: USA