sarah darwins
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This is from The Times (of London), for which I have an online subscription. There are probably other articles out there with free access, if someone wants to get Googling (I have to go out soon and don't have time)
It's about a brilliant 13-year-old girl who figured out her own diagnosis after doctors had dumped her in the CFS waste basket.
This seems to me an excellent example of the damage the catch-all CFS conception can do.
[my bolding throughout]
It's a long article so I've quoted a bit more than I usually would from a newspaper (hope The Times will forgive me) but it's interesting stuff.
Link for anyone with Times access: http://www.thetimes.co.uk/edition/times2/how-a-teen-diagnosed-her-own-rare-illness-gct2gd2qx
It's about a brilliant 13-year-old girl who figured out her own diagnosis after doctors had dumped her in the CFS waste basket.
This seems to me an excellent example of the damage the catch-all CFS conception can do.
Whatever you do, don’t google your symptoms ... Whatever dire diagnosis your search turns up, it’s probably best ignored.
Unless, of course, you happen to discover that you are suffering from a super rare condition with which only a handful of people in the country have been diagnosed. This is what happened to Amelia Ferguson. Two years ago the 13-year-old started feeling dizzy and experiencing cold hands and feet, stomach pains and shooting pains in her legs. Her parents first put it down to exam stress but within weeks their daughter’s symptoms had escalated to include joint and bone pain, nausea, reflux and constipation. Her weight was plummeting, she was virtually unable to walk and weak as a kitten.
While all tests for serious illness came back negative, her parents, Kyrste and David, were alarmed at her deterioration and sought answers from private practitioners, including a neurologist, an acupuncturist, two homeopaths and a chiropractor. “We were begging for her to be taken seriously,” says Kyrste. “She was disappearing before our eyes and it was heartbreaking.”
Amelia was admitted to Queen Mary’s Hospital for Children in Carshalton, Surrey, which diagnosed chronic fatigue syndrome and put her on a drip. By the summer of 2014 she was almost completely bed-ridden. At her lowest she was unable to swallow. “I was no longer able to live my life properly so I’d spend seven or eight hours lying there searching for a cure,” she says, speaking from the family home in Esher. “I didn’t feel like I was getting the right treatment.
“We wanted to believe it was chronic fatigue. Half a dozen specialists were in agreement,” says David, a financial adviser. “They kept saying, ‘We’ve seen this before, trust us, stop worrying.’ We wanted to believe it, but she was fading before our eyes and we were racking our brains for a solution.”
While her parents racked their brains, Amelia took to her iPad. Instead of watching teen vloggers or cat virals, though, she began sifting through medical research.
In December Amelia found a medical paper about a 13-year-old girl in Australia who presented with the same symptoms and the same chronology — the Australian girl’s symptoms began shortly after she had received the HPV (cervical cancer) vaccine, just as Amelia’s had. It suggested that Amelia might have pandysautonomia, a rare autoimmune autonomic neuropathy.
She’s currently in remission, though still weak from the ravages of pandysautonomia and the side-effects of the drugs, so she can’t yet be fully discharged from the Evelina. She intends to embark on a career in medicine but just wants to get back to playing sport regularly first. “I think you have to trust doctors to some degree but if you have been in their care for some time and you have a gut feeling that something is not right you should take matters into your own hands and try to find the answer,” she says.
“But when you start googling you have to take everything with a pinch of salt. There are some very useful sites out there but some people, no offence, write a lot of nonsense. You have to be sure who’s writing knows what they’re talking about.”
[my bolding throughout]
It's a long article so I've quoted a bit more than I usually would from a newspaper (hope The Times will forgive me) but it's interesting stuff.
Link for anyone with Times access: http://www.thetimes.co.uk/edition/times2/how-a-teen-diagnosed-her-own-rare-illness-gct2gd2qx
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