Clare Louise's Story
"I do the same things as everyone else... I just have a lot more obstacles to overcome"
Clare Louise Creedon uses a wheelchair all the time now. It really annoys her that there are so few wheelchair accessible toilets when she goes out in Dublin. On a trip to Orlando, Florida, she experienced how much easier life can be when disabled access is universal. Simple things like dips in the pavement can make all the difference to Clare Louise.
She was diagnosed with Friedreichs Ataxia when she was only 7 years old. In fact she has since discovered that hers is Ataxia Oculomotor Apraxia-1 (AOA1). Although she had no major symptoms as a small child, she had poor balance and her parents suspected something as her older brother had already had a diagnosis. For a long time Clare Louise got by holding onto walls to stay upright, then using a walking frame. In her 20s she was forced to start using a wheelchair some of the time for safety reasons and now, at 40, she needs it all the time.
Her boyfriend, Ollie, is also a wheelchair user, and has helped her to accept a lot about her condition. "He is very supportive," she says, and that helps her to get on with things. "I do the same things as everyone else: I go to the gym, I go shopping, I get the bus to visit friends. I just have a lot more obstacles to overcome."
Clare Louise would love to see attitudes to disability change. She hopes that initiatives like Rare Disease Day will help to make people more aware of Ataxia and other conditions like it. "My parents set up the Friedreichs Ataxia Society in Ireland (now Ataxia Ireland) when I was diagnosed. They had no-one to talk to about it," she says. But she thinks things are starting to get better on that front. She is glad that there is some help there for families now but what she finds hard about being involved with a support group is frequently meeting younger people with more severe forms of Ataxia than herself.
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