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How a UK teen diagnosed her own rare illness - written off as 'CFS'

natasa778

Senior Member
Messages
1,774
Original article behind a paywall in The Times http://www.thetimes.co.uk/article/how-a-teen-diagnosed-her-own-rare-illness-gct2gd2qx

but more details available here: Dying 13 Year Old Diagnoses Her Own HPV Vaccine Injury that Stumped Doctors

...
Admitted to Queen Mary’s Hospital for Children in Carshalton, Surrey, Amelia was diagnosed with chronic fatigue syndrome and put on a drip. By the summer of 2014 she was almost completely bed-ridden. At her lowest she was unable to swallow.

...
“We wanted to believe it was chronic fatigue. Half a dozen specialists were in agreement,” says her father, David, a financial adviser. “They kept saying, ‘We’ve seen this before, trust us, stop worrying.’ But she was fading before our eyes and we were racking our brains for a solution.”

“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.

In December Amelia found a paper about a 13-year-old Australian girl who presented with the same symptoms and chronology – they had both received the HPV vaccine, just before becoming ill. It suggested that Amelia might have pandysautonomia, a rare autoimmune autonomic neuropathy.

Amelia wrote a 1,700 word account of her clinical history, attached the medical paper and her conclusions with it, and sent it to Professor Russell C Dale, a paediatric neurologist at the University of Sydney. He referred her to Dr Ming Lim at the Evelina London Children’s Hospital, part of Guy’s and St Thomas’, who rushed her in for tests and came to the same conclusion.

He put Amelia on a course of immunotherapy using steroids and immunoglobulins.
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
they had both received the HPV vaccine, just before becoming ill
I've been speculating for years that many, if not all, subsets of this illness may have been caused by vaccines. I believe that the medical industry, and it's cronies in government, are entirely afraid of the ramifications of something like this. That is probably why no serious effort is made to research it and why patients have been demonized as being psychosomatic. The truth might just subject them to financially crippling lawsuits if it was ever revealed.
 

undiagnosed

Senior Member
Messages
246
Location
United States
Good for her. There's going to be more and more cases of people doing this kind of self diagnosis. From the excerpt, it says:

Amelia wrote a 1,700 word account of her clinical history, attached the medical paper and her conclusions with it, and sent it to Professor Russell C Dale, a paediatric neurologist at the University of Sydney.

I'm curious how she discovered this professor. That's what I'm struggling with currently is finding a researcher who will engage with me.
 

Cheesus

Senior Member
Messages
1,292
Location
UK
I'm curious how she discovered this professor. That's what I'm struggling with currently is finding a researcher who will engage with me.

I think he was possibly the doctor who made the initial diagnosis on the other patient and subsequently wrote an article about it. At least that is what I infer as the initial patient was in Australia and so is this professor, whereas Amelia is British.
 

undiagnosed

Senior Member
Messages
246
Location
United States
I think he was possibly the doctor who made the initial diagnosis on the other patient and subsequently wrote an article about it. At least that is what I infer as the initial patient was in Australia and so is this professor, whereas Amelia is British.

Ah, that would make sense. Thanks. That actually gives me an idea for how I may be able to better target researchers.