Get involved: send your pictures, video, news and views by texting ECHONEWS to 80360, or email us »
Condition brings on collapses without warning
THE causes of Myasthenia Gravis remain uncertain, but its symptoms are clear enough.
It can strike previously healthy victims out of the blue, causing them to crumple like a puppet whose strings have just been cut. The condition can have a detrimental effect on the most basic muscle actions, such as eating, swallowing, talking, and even eyelid movement. The traumatic effect on the victim tends to be devastating.
Lara Kelly, a 22-year-old beautician from Pitsea, suffered her first onset of Myasthenia Gravis, also known as MG, two years ago. The first sign came when she suddenly collapsed. Since then, she feels she has been the victim of a cruel double whammy.
“You suffer from the condition and you suffer from the fact that people don’t understand about it,” she says.
The general lack of understanding was apparent right from the start. Her GP had never encountered a case. She says: “He didn’t know what to make of the symptoms at first. It took months to diagnose accurately.”
Lisa was referred to the John Radcliffe centre in Oxford, the country’s leading neurological research hospital. “I was warned victims can sometimes be bed-bound for months on end,” she says.
Diagnosis helped Lisa get to grips with the condition, but finds herself facing daunting practical hurdles.
She has had to give up regular work and now lives on disability allowance.
However, because Myasthenia tends to be brought on by physical exertion, and because she tends to be laid up for long periods, Lara needs ground floor accommodation.
“But it’s very hard to get the council to accept this,” she says.
Lisa has a five-year-old son, Jaydon, who starts school this year in Pitsea. Lisa says: “One of the things about Myasthenia is you can’t predict an attack. It just comes without any rhyme or reason.
“There could be a situation where I take Jaydon to school, but then I’m not capable of picking him up in the afternoon.”
Lara’s aunt lives within easy distance of the school, and is available to help whenever needed.
“I need to be able to live fairly close to her, but again the council don’t seem able to take on board what this disease involves and what my needs are,” she says.
Because of its relative rarity – and perhaps because of the lack of a celebrity victim to act as an icon – Myasthenia attracts relatively little research funding, and no government funding at all.
“It makes it harder because nobody seems to be on your case,” says Lara.
Comments are closed on this article.