20 March 2023 , 22:55
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A scout leader discovered he had an incurable disease after a freak zip wire accident in his final year of university sent him to hospital.
Adam Tate was rushed to hospital in 2014 after the line broke and he ended up falling on his back.
Doctors performed a CT scan to check for any potential brain injury, and Adam was shocked when he was told he had Fahr’s syndrome, a genetically inherited neurological disorder caused by calcium deposits in areas of the brain controlling movement.
Adam's parents were told he had eight years to live and he would lose the ability to walk.
The 31-year-old has been able to live something approaching a normal life since the accident nine years ago but says he was frustrated by the lack of information available at the time.
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He told Leicestershire Live: “We were at a local village hall on a zip line, and it was my turn to go down it, and instead of it bumping at the end, it snapped, and I fell onto my head, neck and back.
Adam was injured in a zip line accident (stock photo) (Getty Images)“They told my parents that I only had around eight years left to live, and I’d be unable to walk.
"It was a really traumatic time for me, because not only was I meant to be finishing my degree, but there was little to no support or information available to us, so we didn't really know what we were dealing with.
“It took us six years to reach a firm diagnosis because I’d been to see so many specialists all over the country, and they told me I didn’t have Fahr's, so it seemed like I’d been misdiagnosed in the first instance. But fast forward to 2021, it was confirmed that I did, in fact, have Fahr’s.
“Back in 2014 when the GP initially told me about Fahr’s, we asked him if there was anywhere for us to get information, but at the time there was little information available to clinicians, let alone a normal person, so it was a case of Googling it and finding lacklustre information on Wikipedia.”
Fahr Beyond has worked closely with the national hospital of neurology and neurosurgery in London. In 2021, Fahr Beyond became a fully registered charity, developing occupational services, running patient engagement webinars and becoming a real megaphone for sufferers of the disease.
The charity is working towards setting up the first ever Fahr’s referral service at the national hospital of Neurology and Neurosurgery.
Although there is currently no cure, the charity is looking at the potential for drug therapies.
Adam has since gone on to work as a lecturer at Nottingham Trent University and was recently given The British Citizen Award for Services to Healthcare at the Palace of Westminster in January.