Ron Middlemass has spent the last seven years raising the profile of ‘Rag Doll Syndrome’. Catherine Scott reports.
Waking up one morning Ron Middlemass was worried to find that he had severe double vision.
“Everything was on top of each other,” says Ron, 79, from York. “I was a bit scared, really.”
His wife Sheila had to drive him to the doctor who referred him to the Eye Clinic at York Hospital.
“I was lucky enough to get a doctor who thought he had seen my symptoms before. He wouldn’t tell me what he thought it was because he didn’t want me looking it up on the internet, but I think that was more scary, really.”
A blood test confirmed the doctor’s suspicion. Ron was suffering from a condition called Myasthenia Gravis, or Rag Doll Syndrome.
“I’d never heard of it,” says Ron. “I thought at first it was an Italian sports car.
“The condition causes your muscles to collapse, and that’s why it’s known as Rag Doll Syndrome. It affects different people in different ways. Mine affects my eyes. Other people can struggle to breathe. There’s no cure.”
Myasthenia Gravis can affect anyone, even children. It is not known what causes it.
“We could all be carriers and then something happens and it triggers it. Because there is so little research, they just don’t know,” says Ron who was given medication often used to treat people with Muscular Dystrophy. His vision is much better.
“I still get bad days, especially if I over-do it,” he admits.
Ron joined the Myasthenia Gravis Association, which he now chairs, as he wanted to raise awareness of the condition and money for research into this little known disease.
“There is hardly any research into it because it doesn’t affect that many people,” says father-of-five Ron.
He started by organising monthly tea dances and then A Last Night of the Proms which raised an impressive £2,300. Other events followed including a calendar featuring Ron’s photographs of the area, charity stalls, coffee mornings and carol concerts. Ron has also helped raise awareness of the condition, which has led to more people donating money.
“The son of one of our members was visiting his father in hospital who has MG, when he noticed the machine he was wired up to had a sign on it donated by York Branch Myasthenia Gravis. He got my phone number and ended up doing a Three Peaks walk on his 50th birthday and we got a nice cheque,” recalls Ron.
Over the last seven years the York branch of the MGA has raised more than £40,000 for the York hospital where he was treated.
“At first I wanted to raise money for research but I was told that you needed at least £80,000 to fund one technician for a year and really you needed two, so I had meetings with the doctors to find out what they really needed.
“I wanted to know that every penny we raised when to help people in York with neurological conditions.”
Ron has also spent time visiting other parts of Yorkshire, giving his help, advice and support to sufferers of MG – all in his own time and at his own expense.
Both Ron and the York branch have received numerous awards for their fund-raising.
The most prestigious was last year when Ron and Sheila were invited to St James’s Palace in London to meet Prince Charles, the Duchess of Cornwall and a host of celebrities.
Ron was one of ten people from Yorkshire chosen to receive a Diamond Champion award to commemorate the Queen’s Diamond Jubilee.
“I was proud to be one of the ten chosen,” says Ron.
“I am the only person in York to have won the Diamond Champion Award instigated by the Queen in her Jubilee year.”
Last year he also met football legend Norman Hunter, whose daughter suffers from MG, at the charity’s northern area conference, where York once again picked up best branch trophy.
Although Ron’s sight is helped by the medication, the condition means that he struggles to smile. “People think I’m being miserable, but I’m not,” he says.
Ron Middlemass would like to hear from anyone who is suffering MG email firstname.lastname@example.org
Disease affects 1 in 10,000
Myasthenia Gravis is a disease which appears to the sufferer to weaken the muscles.
It is a disorder of the junction between the nerve and the muscle, caused by the body’s immune system attacking a vital part of this junction – this impairs the ability of the nerve to cause muscle contraction, and hence produces the apparent weakness.
The cause of this auto-immune reaction is not yet known.
MG can affect anyone regardless of age, sex or race.
In the UK, MG is rare before age 10.
Between the onset ages of 15 and 40, about 75 per cent are female.
Between the ages of 50 and 75, about 60 per cent are male.
In the UK, the prevalence is around one in every 10,000 people. There are an estimated 5,000-10,000 MG patients in total in the UK.