Here Katie Henderson has provided some excellent advice on how her ataxia affected her growing up, and which we felt would be useful to the younger ataxia community:

I was diagnosed with Friedreich’s ataxia aged eight and thought I would re-cap the past 25 years, as I would’ve liked some advice on growing up with ataxia when I was younger.

After becoming progressively clumsy as a young child I was diagnosed with FA. A year or so later I was also diagnosed with scoliosis, which is a curvature of the spine. This progressed quite quickly and I had corrective surgery at 12. This marked the end of my back problems, but it had a big effect on my walking ability, I was very wobbly and sort of bounced from surface to surface. At 14 I decided to use a manual wheelchair, and although it was a difficult decision, I gained so much independence from using a chair that I never looked back.

At 17 I got a powered chair, which I used around college, as well as to get me to my job where I worked as a CCTV operator.  Around this time I started talking to people with FA online – where I made some wonderful friends I’ve learnt so much from over the years. Talking to them has become an invaluable source of support. They encouraged me to join a gym, which I’ve now been going to for over 10 years – not only a physical but social benefit too. Exercise has always been a significant part of my daily routine.


At 22 I started a job in administration for West Midlands Police, which I loved as I worked with some great people. But by age 25, with my contract coming to an end, and the accuracy of my work suffering, I took medical retirement, from which I receive a small pension. More than the money it’s nice to have my working days acknowledged. A short time later I enrolled in a counselling course which I absolutely loved; I learned some invaluable life skills and would recommend it to anyone.

When I was 26 I was badly affected by flu (finding out too late how invaluable the flu jab is for people with ataxia!) I was still able to dress myself but, following the illness, I was unable to anymore. I lived with my parents at the time and my care was becoming a huge strain on them. I finally listened to a friend’s advice and wrote to my MP, asking for help in finding accommodation.  Within six months I was invited to look at an adapted ground-floor flat. I began using a hoist and having assistance from carers, using my direct payments to employ an agency worker for three hours a day.

Last year I had corrective surgery on my inverted feet which was a complete success – pain and spasms no more! I am now able to stand again using a frame. Last year I really started to struggle with low moods and cried often. It took a lot of guts, but I spoke to a doctor and was prescribed antidepressants, which made a huge difference.

Shortly after my FA diagnosis I began to struggle with writing, so I would use a computer. However, a few years ago I started to struggle with typing as my fingers became increasingly stiff, so I now dictate to Dragon NaturallySpeaking, which is proving to be fantastic!

It’s thanks to this programme that I’m now enjoying study again, and am working towards a degree in social care with the Open University. My speech is still very good and most days people have no trouble understanding me. In fact if anything I would say it’s improved. Five years ago I started long-term speech therapy, where I learned to control my breath whilst talking on the phone, and at other times when I felt anxious. I make full use of speech recognition technology; when I’m not dictating to my computer, I’m telling my Amazon Echo Dot to play BBC Radio, or dictating a text to Siri, it’s all great exercise!

Most days I am out and about somewhere – I use buses and trains completely independently, and they have taken me to so many places over the years that it would be impossible to list them all here. Living with ataxia has been very difficult over the years, but life hasn’t been without its achievements either.  The most striking thing I've learned is that I can spend years living with a problem and refusing to do anything about it.  Then I finally adapt and I think “why didn't I do this years ago?”


As Katie has shown with her advice, with some adaptions and perseverance, young people with ataxia can have many positive and rewarding experiences, as well as an independence throughout their lives.