As a teenager, Debbie Schwartz felt humiliated as doctors said her illnesses were all in her head.
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"It was soul destroying," said the 47-year-old former teacher. "I felt hopeless, isolated and humiliated."
Debbie has an illness so rare, experts have not been able to identify it - and she is among thousands of people looking for answers.
Now, she is among the first at the UK's first specialist clinic of its type for patients with syndromes without a name.
Debbie spent many of her teenage years being taken the length and breadth of the country by her worried parents who were trying to figure out what was wrong with their only daughter.
"I felt like I was letting my parents down," she recalled. "They were traipsing me around back and forth to hospitals in Newcastle and London.
"As an 11-year-old being told the tests aren't showing anything and your parents are hearing that, there's no thoughts the doctors are wrong because they've done all these tests, they are the doctors, they know. So the diagnosis must be that I've made it up.
"The onus was very much on me and I felt pressured by that. I was in school and just a child. It was difficult."
Debbie felt the medical experts had been "very dismissive" and then, in her late teens, her eyesight, speech, hearing and mobility deteriorated.
