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