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