Anyone any idea how many people (percent) have this condition ? ie how 'special' are we ?

Type of Myotonia: Beckers

Country: England

The most common number I have seen is 1:100,000. Not sure how they measure that or how accurate it is though. I would bet there are a whole lot out there who never get diagnosed.

Country: USA

Estimated

At most: 267,682
At least: 66,920

Type of Myotonia: Becker

The figures I have seen are about 1:100,000 world-wide, except for Sweden, where it appears to be much more prevalent, at approximately 1:10,000. This is for Myotonia Congenita, not for all myotonic disorders. I believe these figures are more statistical genetics than actual survey/study numbers, because it is known that there have been many people with these gene mutations who were not diagnosed until fairly recently (if ever!). It will be interesting to see how (or if) the stats change as DNA testing and understanding of the various mutations enhances information about us.

Type of Myotonia: Myotonia Congenita, Becker's type

Country: USA