Just another free Blogger theme

Follow By Email

Monday, 20 February 2012

8 days to go until rare disease day 2012!

Jamie O'Brien's Story

Jamie O'Brien's ambition is to work in music production and website design. He lives in the North East of Ireland. He's 21 years old and last year he started a course in Creative Media at Dundalk Institute of Technology. A few months into the course, he realised that his condition would make it impossible for him to continue for now and so he has had to take a break. Jamie has Ehler-Danlos Syndrome Type 3 (the hypermobility type).

Every day, several times a day, Jamie's joints dislocate. The slightest movement or exertion triggers dislocation - lifting something very small puts out his wrists, climbing a stairs will dislocate his knees or ankles. His symptoms first appeared when he was about eight years old, starting to get physical and play sports. He could not write more than one sentence and his teachers at school thought he was just being lazy. Back then, the biggest challenge was getting people to believe that there was something wrong. "I didn't even believe it myself", he says. He did not understand then that his fingers were actually dislocating.
Some things got easier after he was diagnosed at 16. He found it easier to make friends once he could explain his condition. Disability services became available to help with certain aspects of life. Now his greatest challenge is his left shoulder. He has learned to deal with most of his joints, and to cope with constant pain. His attitude is "snap it in, keep smiling, keep walking, you have to get used to it." But when his left shoulder goes, he has no choice but to attend the Emergency Department of a hospital. And if the doctors are not familiar with him or his condition, it takes time to get the right treatment. More time than he can afford to be away from a busy college schedule.
He hopes to be able to study again though, and plans to return to college as soon as he can get the pain and dislocations under enough control to allow him 2-3 weeks between hospital visits. He would like more people, including doctors, to understand the issues around rare disease. "There's no system for people with a rare disease," he says. But he hopes that initiatives like Rare Disease Day will go some way towards building awareness and improving the situation of all those affected. In the meantime, he says "you have to take life one laugh at a time. - Rare Disease Day 

Lorem ipsum dolor sit amet, consectetur adipiscing elit. Pellentesque volutpat volutpat nibh nec posuere. Donec auctor arcut pretium consequat. Contact me 123@abc.com


Post a Comment