Charlie's Story

I was the youngest of 5.

My oldest brother and sister were diagnosed with Myotonia Congenita around the time I was born.

My other brother and sister had no symptoms and neither did I until I was about 7 years old.

I vaguely remember having some tests of my reflexes, but don't think I was ever formally diagnosed, and so far as I am aware there is absolutely nothing in my medical records to indicate that I have any problem.

I thought even at the age of 7, I am going to fight this, so that no one knows, and everyone perceives me as normal.

I am not going to admit to it, and I am not going to show it.

So started a sequence of behaviour that I have lived with for the last 50 years.

Its about pre-tensing your muscles when apparently in a state of rest, before actually standing up from a seated position and walking. It keeps your brain extremely active, because the most important thing is that no one knows.

I have got away with this most of the time, all my life.

Its never stopped me from doing anything I want to do.

I have always competed fairly with everyone else at absolutely everything such as...

Applying for jobs - I always managed to pass the medicals without them picking anything up.

Girls - well that was the toughest one - but I never said until after we had fallen in love - and then it wasn't an issue.
Of course there is the matter of heridiatry, but my brother's wife trained in genetics, and she was totally convinced that the variant we had would not be passed on to our children - unless both parents had the same genetic defect. With partners chosen at random this would be a million to one chance. And so it has turned out. There is absolutely no incidence of it in any of our children, or any relation whatsoever (involving hundreds of people). Just my brother, sister and myself.

Sport - well I was never going to win a sprint - but I have driven very powerful motorcycles and sports cars and have never had a serious accident that involved an insurance claim. Not once in 40 years.

I learnt to become a solo glider pilot. I never admitted it - and gliding is a social activity where everyone helps each other to get in the air. This involves having to run - holding the wingtip at the start of a launch. It's just a matter of pre-tensing those muscles.

Diving - I'm not a great swimmer - and never thought I would have the courage to do it - but yes I started diving at the age of 45.

Sure I signed the form stating that I had no medical condition. I have not been formally diagnosed with any medical condition and have passed the medicals.

I am not disabled. I do not have a disabled sticker for my car.

Over 20% of the population are far more "disabled" than I am because they are grossly overweight.

It has never caused me any pain, and I have never complained.

I have never taken anything for it.

Just mind over matter and determination to do it.

You may think - oh he must have just a very mild version. Yeh - sure.

Hi Charlie. Boy your story sounds alot like mine. I never list my MC on forms requiring medical conditions, because it would just bring up alot of questions. MC doesn't affect my performance at work. I have learned to hide it very well. Like you, most of my friends and co-workers never knew there was anything wrong.

P.S.... I have been diagnosed by a specialist about 20 years ago. 4 of my siblings and my mom have it. They too carry on their day without to much trouble.

Everyone is different and there are different types and severities. Mine varies largely dependent on how tired and stressed I am. Exercise is very beneficial, but strangely if I embark on an exercise regime, the stiffness will actually get worse for the first few days before it gets much better. Sometimes I am hardly aware of it at all, and at other times it is really bad if I've been working very hard and not getting much sleep.

But parents discovering their children have it, shouldn't get too upset and make an issue of it. I even made the school football team at primary school, and I don't think my teachers knew anything about it until I was about 14 and was unable to do some of the more demanding PE.

The percentage of children now with disabilites seems much higher than when I was young and many disabilities are very much worse than myotonia.

Whilst I am aware that there are drugs available that will almost completely eliminate the symptoms, all these drugs have very dangerous side effects particularly when taken on a long term basis. I really don't think they are worth the risk.

The most important thing is to have a positive attitude, do lots of exercise, have a well balanced diet and avoid getting overweight - but this applies to everyone.

Being seriously overweight is far more disabling than having myotonia - yet around 20% of the population are seriously overweight.

Jan,
Which do you prefer? E-mailing you our stories or posting them in the forum?

Charlie,
It's awesome that you didn't let MC stop you from doing anything that you wanted to do. I tried to never let it stop me either. I played sports all the time when I was younger. It was a little annoying to have to warm up all the time, but it was just what I had to do. I still continue to run, bike and exercise. It's good to read about some one with MC that doesn't let it define them. Thanks for your story.

It's fine to post stories on the forum as long as they meet the guidelines. However I think more people will ultimately see them if they are also linked on the website like the previous stories. I'll cut and paste Charlie's story and add it to the group.

Jan