We aim to provide information through direct experience to raise awareness of myotonia congenita and other diseases where myotonia presents as a symptom
We offer first-hand information of what living with myotonia feels and looks like in an attempt to make symptoms more understandable and recognisable to both sufferers and those around them.
Through shared information and experiences we aim to offer support and guidance as best we can.
Through our ongoing initiatives it is our aim to bring a greater understanding and awareness of myotonia congenita to the wider public. We also offer our availability to the medical community to further, as far as we can, the understanding of myotonia, its symptoms and treatments.
I was diagnosed with myotonia congenita when I was 37 years old. The diagnosis has had a profound effect on my life and inspired me to try to provide information to others in the hope that it can make a positive impact in someone else's life. I feel incredibly lucky to have had access to the medical experience, time and care of my GP, whose perseverance and interest in my well-being led me, after years of various tests, to finally being diagnosed with myotonia congenita. I would now like to do what I am able to, to extend the fortune that I have had to others, and it is in this spirit that myotoniainfo.com operates, in an ongoing attempt to raise awareness for myotonia congenita.
When considering the psychological effects of myotonia congenita, it is important to remember that the sufferer may experience a dichotomy between severe physical and emotional effects and a minimisation of the symptoms that they have. Read more…
First Memories of Symptoms: The earliest recollections I have of suffering the symptoms of what I now know to be called myotonia happened when I was around twelve years old. The situation in question is Read more…
Obstacles to diagnosis The major obstacles to diagnosis of myotonia congenita can be: – The subjective experience of feeling “stiff” apparently a feeling experienced by everybody can obscure further investigation into the underlying problem and Read more…
Examples of the physical effects of myotonia congenita As already described, the physical effects of myotonia manifest themselves as stiffness or rigidity. This is particularly pronounced following a prolonged period of inactivity. Common examples are: Read more…