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Wednesday, 21 March, 2001, 18:45 GMT
'ME has taken over my daughter's life'
Lynn Gilderdale: has suffered from ME for nine years
Lynn Gilderdale: has suffered from ME for nine years
Kay Gilderdale, whose 23-year-old daughter Lynn is severely ill with ME tells BBC News Online how the illness has affected her family over the last nine years.

Lynn Gilderdale, from Tunbridge Wells in Kent, was a happy 14-year-old when she fell ill.

She had been an active teenager; sailing, dancing, playing the clarinet and piano and going out with her friends.

After a BCG vaccination for TB, she felt unwell. She then went on to have bronchitis, tonsillitis and glandular fever in quick succession.

If I could bring people here each day and make them see what Lynn has put up with... It's taken over her whole life

Kay Gilderdale
Kay said: "Our GP told us she was developing a post-viral infection. But she began to get very ill and we knew that there was something very serious going on."

She was diagnosed then as having ME.

The family followed their GP's advice and encouraged Lynn to take as much exercise as possible.

But that proved to be the worst course of action, says Kay. "We would walk her down the road and she would get back to the house and collapse.

"It got to the point where she was totally bed-ridden and she couldn't sit up without going unconscious.

"She couldn't swallow anything at all. She was in terrible pain, with muscle spasms and she had swollen glands and lymph nodes.

"We were very frightened by the whole thing and we went to the medical profession to try to get some help."

But she says: "We came up against a brick wall because nobody seemed to realise ME could be that serious."

'Lack of help'

A short stay in a psychiatric ward, the only place available, proved to make Lynn's health worse.

Lynn is bed-ridden
Lynn is bed-ridden
So for the last nine years, Kay has cared for her daughter at home, giving up work to do so.

She says she gets extremely angry when people dismiss ME.

"Lynn knew she was very ill. We knew she was very ill, but she had doctors and nurses telling her that she was pretending and that she could do more.

"We get very very mad if we see anyone who doesn't believe ME is an illness, and if people just think its a very minor illness.

"If I could bring people here each day and make them see what Lynn has put up with... It's taken over her whole life."

When she came home, Lynn could do nothing for herself. She could not even speak.

Over the last nine years, she has suffered a number of complaints.

Last year she had a clot on her lung. And she has suffered from low cortisol levels, which could have led to her adrenal glands failing.

In the course of treating that, doctors looked at the hypothalamus in the brain, and found that was where the problem lay. She is now on steroids to correct the problem.

Lynn also has osteoporosis because of low oestrogen levels.

Her health has improved a lot over the last nine years. She still cannot speak, but can communicate through sign language, and she is bed-ridden, but can mover her arms and the top half of her body.

Her memory is still bad, and she has to be fed through tubes because she us unable to swallow.

Kay says the family's life has changed dramatically since Lynn got ill, though the family have no way of knowing when she might get better.

But she is determined to do so. Kay says: "Lynn always says to us that she hasn't given up so much not to get better."

Over the years she has had to watch her friends, and her older brother go through the normal stages of growing up, and hearing their news makes her happy.

Kay says: "But sometimes I read letters to her and there are tears in her eyes because she can't do any of that."

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See also:

04 May 99 | Health
Fatigue not worst symptom of M.E.
01 Mar 00 | Health
Term-time link to chronic fatigue
17 Jul 98 | Health
Government to tackle ME
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