EDS – Living with a life changing disorder
Jamie O’Brien is just like any other energetic 21 year old with a passion for life. He plays the decks, enjoys hanging out with his mates and loves going to concerts.
But the avid music fan from Ardee, Co Louth can’t do everything his friends do because he has a rare condition holding him back.
Jamie suffers from EDS or Ehlers–Danlos syndrome, a rare hereditary connective tissue disorder which causes him to dislocate every bone in his body every day. The type of disorder Jamie suffers from is called type three hypermobility which affects 1 in 10,000 to 15,000 people. “It’s very painful,” says Jamie. “I can’t go out with my mates the way normal people would. If I’m going to go out I’d go for a big thing.
“But I’d rather live my life then be bored at home,” he adds with a wry laugh. Despite an upbeat attitude, he faces suffer on a daily that most of us would find unimaginable.
“School was nothing but agony for me,” he explains. “From the age of eight, my bones would be dislocating once every few weeks in the beginning, but then it got more and more frequent until it was every day. I didn’t realise what was going on.” By the time Jamie was 16, things were going from bad to worse. “We were getting calls to the house from social services, they thought I was being abused.”
“The GP told me I was just lazy and mum couldn’t face going back to the doctor, so we ended up going to a specialist. He looked at my limbs and said I might have EDS.” It wasn’t until Jamie was referred toTemple Streetchildren’s hospital that he was officially diagnosed with the disorder. “I was both relieved and peeved,” says Jamie. “So far, there is no cure.”
Education has been an uphill struggle for years. Failing his mock Junior Cert exams, it wasn’t until he was given a scribe that he got good marks. “Basically, my fingers dislocate when I write.
“If I drive a car my wrists will dislocate, my shoulder comes out once a week I end up in A & E, my knees snap every day I have to snap them back in myself.”
With this gruelling routine and at least one weekly trip to the hospital, Jamie’s life is a blur of excruciating pain, dislocated bones and frustration at not receiving the right care.
“I’m on so many painkillers that if you shake me I’d sound like a smartie box!” the youngster quips.
But Jamie explains that the disorder is only half of his worries.
“I got a letter from a psychiatrist explaining that the HSE is not providing what I need, and it’s the services letting me down.”
But the lack of facilities is not only affecting Jamie – it also affects those closest to him.
“It affects my mum in two ways – it affects her physically because she is lifting me snapping joints in and having to run me down the hospital constantly.
“Then mentally too, she doesn’t like seeing me in pain, she can’t look at me in the eye when I’m in pain.
“There is no communication between hospitals. When you end up in Vincent’s and they can’t pop your shoulder back in and then you have to travel back toDroghedaand again queue for hours – it can be a long night.”
But Jamie wants to stay positive and make the most of his life
“I went to Bon Jovi and I’m planning to go to Electric Picnic this year, my mates are a great help,” he says.
“It’s getting harder and harder to DJ. Once I was on the decks and my shoulder dislocated, then my wrist on the same arm dislocated too. I kept going but I eventually passed out from the pain.”
“I am determined to work in music. That’s why I’m starting college in Dundalk Institute of Technology this September.”
Jamie is trying to do as much as he can now, because he has been told the condition will only get worse in his 30s.
“I have good days and bad days. When I have bad days they’re really bad.
“There have been days I have been in hospital and I’ve said to my mum, ‘I give up’, and she’d tell me to keep fighting. But the days that are good I kick myself out of it. After all – life should be enjoyed.”