So you know how I said nine times out of ten when you tell someone you have myasthenia gravis, they look at you with a blank face? Well I had the rare one out of ten meeting yesterday.
While having a conversation with a colleague in the office kitchen, it came out that I have MG after I explained my dairy free diet. Expecting the normal blank look or the general questions about how it affects me, I was intrigued when she stepped back and looked shocked. It turned out that she is not only a trustee for Myaware but also set up the children’s branch of the charity as her son has congenital myasthenia. Very small world considering we only work a few desks apart.
Although I had spoken to a couple of parents the first time I went to a Myaware conference, in our brief conversation I learned a great deal. It was fascinating to hear about some of the challenges young people and parents affected by CMG/MG face.
She told me about the ‘Little Britain’ effect of having a child with CMG. Due to the fluctuation of the condition, sometimes a child can be in a wheelchair due to their muscle weakness and yet will be able to jump out of it if they see something they are interested in. Obviously people stare, and the term ‘miracle’ has been used jokingly, but unlike the TV show’s character Andy, the children are not taking advantage of having a disability. Yet parents are often treated like they are and are made to feel guilty about a whole range of different things before a diagnosis is secured.
This is partly due to parents taking their child to the doctor with symptoms but, by the time they reach the surgery, everything appears normal again. It’s also to do with the blame the parents culture we have in this country – if people with MG are allowed to feel the following, parents of children with MG/CMG should be allowed to.
I had previously discussed with Myaware about becoming a trustee and, after the brief conversation with my workmate, I’m even more keen to get involved. We plan to have a more indepth chat over a coffee next week and I hope I will be able to reveal then some ideas I’ve had about helping out with the children’s and young people’s branch. As I didn’t feel comfortable asking my colleague for a snap together, today’s picture is unrelated to this post other than it reflects my positive mood at meeting someone who understands at work.