This year celebrates the eighth anniversary of Rare Disease Day and a Louth woman has spoken out about living with such a condition.
Maria Teanby, 67, was diagnosed with Myasthenia Gravis (MG) in 1998.
MG is a rare auto-immune disease causing fluctuating muscle weakness. It’s a neuro-muscular condition which can affect talking, walking, swallowing and breathing.
There are around 10,000-12,000 people living with the condition in the UK, but it can be very difficult to diagnose and as yet there is no cure.
Maria said: “I was once a headteacher at a local primary school and being a fitness fanatic, I put my symptoms down to over tiredness and thought no more about it until a few months later at the infant school disco.
“I always used to pick up the shy ones and dance with them in my arms. Not this time. I couldn’t lift a single child. Again, I put it down to being over tired and my GP agreed.
“By the time I got to see a neurologist, I had done my homework and felt that the only condition that totally fitted my symptoms was Myasthenia.”
Maria added; “I finally got a diagnosis three years after the first appearance of my symptoms, by which time it had entirely changed my life. Imagine being a headteacher and not being able to speak, write or walk about.
“Of course I had to retire and was in a wheelchair by the time I did, but things weren’t as hopeless as they seemed. I got a lot of invaluable help and advice from charity Myaware on how to manage the worst aspects of the disease.”
Maria is heavily involved with the Myaware Lincolnshire support group, which relies on voluntary donations. To find out more about myasthenia, visit www.myaware.org.
Maria added: “It’s like living with a sleeping dragon. Don’t go doing things to provoke it, treat it gently.
“Twelve years on, I have completely changed my lifestyle. I am fit and well and go to the gym three times a week.
“So my main annoyance with MG these days, apart from being cast to the ground roughly and breaking bones as a result is that nobody has heard of it. Folks find it hard to relate to the fact that I sometimes have to refuse invitations out. They just can’t see why. But you’re so fit and well they say, I am, but I have this invisible problem that can let me down, literally, at any time.
“The friendly fire is always there and, whether you duck or not, chances are you will get hit.”