by Kim Briscoe
Tuesday, April 26, 2011:
Kerry Newnham is just 34, but has spent the past 14 years of her life bed-bound in a darkened room because of severe ME.
She was a bright student, very active in sport, playing the flute and piano and wanted to teach, travel and do charity work.
She began having pains in her legs when she was 15, but just before she turned 16 she had exams, a two-week hill walking holiday and two weeks in bed after a viral-type illness and after which she was never well again.
Throughout sixth form there was non-stop deterioration and despite the constant tiredness Kerry still managed to secure a place at university in Leeds to study English and music.
She struggled through her first year, but in the end had to give it up because her health became so poor.
Kerry is now bed-bound and stays in a darkened room in her home at Shaftesbury Court in Lowestoft because she is sensitive to the light and to too much stimulus.
Her mother Angela, from Gunton Drive, Lowestoft, said: “When people meet Kerry for the first time, health professionals and carers are really quite shocked at the impact the illness has had on her.
“It has had a devastating impact on her life and she hasn’t really got any quality of life.
“She’s not able to watch TV or read a book or do anything. She can’t have anyone site with her or talk to her because she can’t cope with that sort of stimulation.
“We washed her hair about six months ago because she hadn’t had it done for a year, but it made her even more ill. She hasn’t had a bath now for a year and half.”
Kerry is too ill to be interviewed in person or by telephone by the EDP, but said in an email: “No talk of management or warned that serious in the early years. That was my downfall.
“Took 18 months to get diagnosis and then reassured would just go away. Always told to get on with it & must push myself despite almost constant malaise / tiredness.
“Had doctor, four years in, almost persuade me it was psychological and had to stop looking for physical cause. Advised to work through fatigue even though had had to leave uni after one very difficult year & was housebound & hugely struggling cognitively.
“Too ill to visit specialists and no GP support/ advice so exhausted myself trying unproven alternative therapies, even travelling to them.
Resulted in profound disability, especially & distressingly cognitively.
“No-one including myself, could not believe what had happened to me, gradually deteriorated to this: kept alive with tube feeding. Can only speak the odd word / sentence now and then so communication is through signing / typing or a speech aid. Curtains always drawn. Can’t cope with visitors or adequate personal care. Had hair washed recently for first time in a year - made worse & now have to be helped onto a bedpan. My most distressing symptom is cognitive dysfunction and confusion, loss of sense of self and profound problems thinking /seeing /imagining etc. My brain feels smashed & I’m stimulation intolerant.”
The severity of ME came to public prominence after Kay Gilderdale was cleared of her daughter Lynn’s attempted murder in January last year.
Lynn, 31, had injected herself with morphine in December 2008 after being bedridden with ME for 17 years. Having discovered her daughter’s failed overdose, Kay gave Lynn more drugs when she feared she would be brain damaged.
Mrs Newnham, 57, said Kerry had two or three text pals, and one of them had been Lynn.
She said: “It affected her terribly badly when Lynn died. There are ever so many similarities between them, but Kerry isn’t in pain like Lynn was.
“But she gets so she doesn’t want to carry on sometimes, it’s so depressing.
“She just needs something to give her a chance to get better. I don’t think it’s going to happen when there’s nothing being done for these people at the moment. This research could be a lifeline." Read more>>
Doctor Speedy and ME in search of medical honesty
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