Co Derry man launches his own support charity to research rare disease

A Co Derry man diagnosed with a rare disease that affects his speech, movement and emotions has launched a fundraising page to set up a charity for those suffering with the condition. Doug Wylie, from Magherafelt, was an active 37 year-old studying for his PhD at Imperial College London when he began to have stomach and balance problems in August last year. His symptoms, including nausea and vision problems, intensified as doctors attempted to find the cause. “It kept getting worse and worse every week or two weeks and by October I really was in bed pretty much all day. “I started getting headaches and weird eye movements and also my nausea and balance problems got worse,” Doug said. After undergoing a range of tests, he was eventually diagnosed with a rare form of an already rare disease called isolated neuro sarcoidosis. “When he told me it was neuro sarcoidosis, I’d never heard of it and we thought that that was good news, better than a brain tumour or some kind of terminal cancer,” he said. Doug said that the disease can affect any part of the body, but in his case he was extremely unlucky that it is focused in the cerebellum, a region of the brain that regulates muscular activity. The disease affects muscles including those of Doug’s eyes and mouth meaning his vision has become blurred and his speech slurred. Doug said that as the cerebellum plays a role in how a person controls their emotions he has experienced short bursts of strong emotion like anger or amusement. “I will be prone to crying out of the blue as soon I get a little bit emotional. Normally I would be able to control that. But now I can’t,” he said. “I’ve gotten used to it now, but it’s maybe a bit disconcerting for other people who don’t know why that happens.” A past pupil of Rainey Endowed School, Doug has an academic background in science, with a Masters degree in Biophysics from Ohio University. He said that this experience has helped him find the strength to tackle the disease. “I know that we can find the cause and the cure, because it’s not that difficult, it just hasn’t been done yet. That’s what keeps me going,” he said. “If I was physically able to go in the lab I would do the research myself but unfortunately this is no longer possible. As long as I can communicate my ideas to the right people I believe that I can still play a big part in developing a cure.” Doug set up a Justgiving page on Thursday which raised over £2,000 on the first day and had raised XXXX by Monday evening. Money raised will go toward establishing an official charity – known as Building Research and Awareness for (Isolated Neuro and Neuro) Sarcoidosis or BRAINNS - which will be involved in research of the condition as well as supporting those with the disease. To donate to Doug’s JustGiving page, visit - https://www.justgiving.com/crowdfunding/douglas-wylie Photo shows Doug with his wife Gail.