Bex lives in Exeter with her partner Nick and two-year-old daughter Ava. She’s 32 years old, and was diagnosed with Friedreich’s ataxia when she was 16. She was the face of our 2017 Exeter awareness campaign.
Bex watches from her wheelchair as Ava, running around with a toy camera, joins us in taking photos of her mother. Nick, Bex’s partner, chases around after her, trying to keep her quiet as we interview Bex for the campaign video.
Bex may be the face of our campaign, but she’d be the first to say that ataxia hasn’t ruined her life: she hasn’t let it. Nevertheless, she finds the public’s reaction to her ataxia difficult at times: “Some people, I guess, can be overly friendly, maybe slightly patronising.” She has also been accused of being drunk on numerous occasions, as her Friedreich’s ataxia (FA) causes her speech to slur. Now in a wheelchair, she can feel overlooked by members of a public who don’t know how to act around her.
Like most people, Bex and her friends and family had never heard of ataxia before her diagnosis. When she found herself unable to carry cups of tea up a flight of stairs at a Saturday job – finding the cup was almost empty when she’d reached the top – she became aware that what she’d taken as clumsiness “wasn’t really normal.”
After two years of unrecognised symptoms, an operation on her brain and a blood test, she was finally diagnosed with FA: a genetic condition that’s progressive and has no cure. Her clumsiness was going to get worse.
Our Support Network
Bex began the South West Branch of Ataxia UK in 2006 to create the community who have made this campaign. Without the support of the charity, she “wouldn’t have gotten in touch with all the other people who have ataxia,” and our Branches and support groups are how we try to combat feelings of isolation among people who are affected by ataxia. Bex also attends Ataxia UK’s Annual Conference, fundraises at every opportunity and volunteers her time whenever she can.
She is just one of the many people who have helped make the ataxia community the supportive environment it is today – but we need to do more in order to help people like Bex and her family: we need to create a public that doesn’t make people with ataxia invisible or targets for our misconceptions. Our wonderful fundraisers work hard, not only to help fund our research into finding a cure, but to allow us to share the word of this condition. Until we have a world that is free from ataxia, we need your help to stop people’s misinterpretations of its symptoms if we are ever to stop ataxia ruining lives.