He was given a 'one in a million' diagnosis following a zip line accident.
A Nottinghamshire man was given a 'one in a million' diagnosis when given a CT scan following a zip line accident.
He said it led to "a bit more confusion". In 2018 Adam was invited to participate in the 100,000 genome project to have genetic testing to determine if he had a rare disease. It was not until three years later that Adam received the results. Adam, who is a lecturer at Nottingham Trent University, added: "One in a million people are diagnosed with it but that rate of diagnosis is really poor. By that logic there is 150-ish in the UK with it. It is thought if we got the diagnosis process correct, there would be about 80,000 people with it in the UK. Still not a massive population impact."
Adam's charity work resulted in him being awarded a British Citizen Award for services to healthcare. He said: "[It was] incredibly humbling to be one of 29 people to be honoured at the House of Lords, it was very inspiring. It was very humbling and awe inspiring." Upon getting a diagnosis, Alison, 39, was amazed at how little resources were there to help patients and their families. She said: "I was looking around frantically online to find out what is Fahr's disease and make sense of all the literature. I came across Adam's charity and got in touch with him from there and offered my help.
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