Hi!

My younger brother has recently been diagnosed with Myotonia Congenita, he has always had stiffness in his legs and only in October was the diagnosis confirmed (he's 9). To be honest, for my family it is a massive relief to know exactly what it is and how we can help him.

In the future I hope to become doctor, at the moment I am studying for my A-Levels and as part of my studying I am doing an Extended Research Project (EPQ) on 'How effectively managed are the main social and psychological impacts of inherited muscular disorders in childhood and adolescence?'. I hope to publish a paper later in the year.

I would be eternally grateful if you could fill out this survey:

https://www.surveymonkey.com/s/5QNJHQR - for parents of the sufferers of the condition

and

https://www.surveymonkey.com/s/Z26VWCD - for child/adolescent sufferers

However of course if you do not wish to, that's completely fine (of course!)

Thank you for taking the time to read this post!

Millie

Type of Myotonia: My brother has Myotonia (we are waiting on genetic tests to show what type)

Country: United Kingdom

Millie,

Thanks so much for setting up the survey. We get quite a few visitors on this site and hopefully they will fill it out.

However if you post the link on the Facebook page called Myotonias you will definitely get a lot of responses:

Myotonias

This group has members with several different types of myotonia, not just MC.

Jan

Type of Myotonia: Thomsen's

Country: US

Thank you so much for telling me Jan!

Millie

Type of Myotonia: My brother has Myotonia (we are waiting on genetic tests to show what type)

Country: United Kingdom