I was diagnosed with Friedreich’s ataxia (FA) when I was eight years of age.

What is FA?

In order to make the rest of your body move, your brain sends messages to it via nerve cells. Basically a message leaves the brain and then it is passed from one nerve cell to the next and so on until it reaches wherever it needs to go to. Then another message is passed back through the body to tell your brain that it has moved.

But in my body the nerve cells that carry these messages progressively become damaged. I move in a very awkward and uncoordinated way because the messages become mixed-up. My balance is affected because my brain doesn't receive sufficient feedback from the rest of my body. In fact, without looking at what I'm doing and getting visual feedback, I don't really know what my body is doing. I always have to look at what I'm trying to do - when I could walk I had to look at my feet, and now when I type I have to look at my hands.

It's like your brain and the rest of your body being on two ends of a telephone conversation. Both parties are talking and listening as they should be, with the brain telling the body what to do and the body telling the brain that it has done it. But the telephone wire (which acts like the nerve cells carrying the messages) has become nicked and knotted and the conversation becomes jumbled up.

Why does this happen? Well FA is recessively inherited. You have two copies of every gene in your body: one from your mum and one from your dad. With something that's recessive, be it FA or red hair, you need both copies of the gene to carry it. If only one copy carries it but the other doesn't, then the copy that doesn't carry it will dominate. In my body both copies of the gene carry FA - there is no 'good' copy to override the bad FA one.

The bad copy has a rogue instruction in its DNA and my body is instructed to make too little of a protein called Frataxin. Frataxin regulates the amount of iron in cells, and not having enough of it means that iron builds up in the cell. The build up of iron causes damage to the cells. The cells mostly affected are nerve cells, but cells in the pancreas and heart can be affected too, causing Diabetes and Cardiomyopathy, and also cells within bone tissue which causes Scoliosis (curvature of the spine) and feet deformities.

FA is pretty rare - 1 in 40,000 in the UK (that means there are about 1,500 people who have FA in this country). I don't really like having something that nobody knows about, and if you happen to meet me in person then please know that I'm more than happy to talk about it - in fact I appreciate it when people take an interest and it makes me feel that I'm raising awareness in a small way.

This is my story.  Read about my diagnosis...