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Last updated: July 2017

My disabilty: My diagnosis

The first thing I remember - I must have been about 4 - is going shopping every Sunday with my mum and sister. We made the ten-minute hike to the shops, which wore me out so much! Walking any distance tired me out so much. I would also walk so slowly and deliberately, and would trail at least twenty yards behind.

I also remember being really clumsy. My legs were black and blue with bruises from me falling over all the time. But most kids are clumsy and I don't think my parents thought anything of it at this stage - everybody probably just thought it was a growing phase and something which would sort itself out.

When I started school - I would have been 5 - I have some quite vivid memories when I started to sense things weren't quite right. I wasn’t at all self-confident when it came to Physical Education like my classmates - climbing ladders and walking planks seemed like mission impossible - the co-ordination just wasn't there. I couldn't understand how other kids could climb rope and ladders and jump off horses without being so afraid of falling like I was.

Over the next year or so it became clear that my clumsiness was getting worse. My parents took me along to a GP and he referred me to a consultant quite swiftly. From there I was sent for so many tests that I'm surprised that I don’t glow in the dark! My consultant always suspected it was FA as he was experienced and had seen ataxia before in other patients, but as there was no definite way of testing for it at that time (now it’s just a case of a simple blood test) it was a matter of ruling everything else out.

Just before Christmas 1991 (I was then eight years old), I was diagnosed with FA and an associated disorder called Cardiomyopathy which is a thickening of the wall of muscle in the heart. It has never been much of a problem for me; the thickening itself is very mild and has not progressed since diagnosis. I take no medication although visits to a heart specialist are yearly and I have an echocardiagram scan (ECG) every two years, just to keep a check on things.

Although I was asked to leave the room when my consultant told my parents of my diagnosis, my parents told me an “eight-year-old friendly” version when we arrived home. Although I took it all in, at the age I was I wouldn't of understood the implications that such as thing would have on my life. As the months and years passed my curiosity grew and I began to ask my parents more probing questions. My understanding of my condition gradually deepened with age and maturity.

A year later I was diagnosed with an associated condition called Scoliosis...

This website has been around sinse 1998, and although it's changed a lot over the years it's always been about me and my disability. Over the years I have used many different hosts and website design packages. For the past ten years or so I have used 1&1 as my host and I have always been very happy with it. I have always wanted to learn how to build a website from scratch using Adobe Dreamweaver, so about three years ago I got in touch with Polar Solutions and arranged for a trainer to come out to my home to teach me at my own pace. So I now design this website using Adobe Dreamweaver and the skills I learned on that course.