How I got the Condition Ataxia
Ataxia is a Greek word for “Lack of Order”. Our mission is to bring some order with Ataxia awareness.
As part of the Ataxia Aware project, we are sharing personal accounts of those with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.
The Early Signs:
At the age of 14, I went to France with school for foreign exchange for two weeks. I was homesick, I had insomnia and my best friend was quite far away from me. I didn’t know the language, I wasn’t eating and if I did it would come back up, so I had no energy, I didn’t enjoy my time.
So when we came back to the UK, I went to school and my best friend said, ‘Kelly, what’s wrong?’ My voice slurred and when I came home, my mum said, my left side had drooped, so off I went to hospital. I had numerous scans and tests and I was a guinea pig until I was 16. They thought I had a brain tumour, but no they couldn’t find anything on the scan. The outcome was I had a virus. I had to learn to walk, talk and run. At the age of 16-17, I thought, ‘oh it’s a virus, get on with my life because it’ll just go.’ So I had boyfriends and I had jobs, I got on with it.
Getting Some Answers:
When I was about 30, I had an eye condition called carotid conus, which means your corneas have blown. So my vision is not as it was. In 2017 my voice just went again. I couldn’t read properly and couldn’t text because I couldn’t read them or if I write them, they’re back to front. After my voice went again, I noticed my symptoms like having a bad hip, my mobility and memory weren’t great. So I thought, I think it’s more than a virus. So I researched it.
I got my records from the GP, I went through all of them and I asked to see a neurologist. So about this time, I’m 40-41. So I got to see a neurologist and he said, ‘you’ve got mild ataxia’. So I had to go through tests like you’ve got to walk through a corridor and then they watch to see how steady you are. And then I had a genetics test. The genetics test came back fine. Nobody in my family has got it.
And then my neurologist decided to retire…
So I had to wait for another neurologist. I last saw this new neurologist last year. And I said, ‘could I ask for a scan?’ And he said, ‘yeah, no problem. Yeah. It’s a good idea to get answers.’ So I just had my scan this year and I’m just waiting now for the results.
Now, this is where it gets interesting. My new neurologist went through my notes. From when I was 14-16 And he said I had ataxia.
Why did I not find that? Why wasn’t I told that? Or my parents told that?
Keeping Busy:
Since I was 16, I have worked. I have got on with it. But I have noticed that I have had doctor’s notes saying that I had to be off because of anxiety.
I wasn’t very good at being with people. I was always in the back doing restock. But I suppose I had bad days.
Since I lost my voice again, I lost my confidence. And I thought, I’ll volunteer. When I was working before, I was working in a chemist and my manager said, ‘you need to be honest with what you’ve got’. I never adapted to what I had. I’d just come with it because I wanted a job.
So instead, I volunteer.
I was volunteering at Severn Hospice and eight years on, I’m still there. I struggle in finding work. I can’t sit at home and do nothing. I need to do something.
I also volunteer for English Heritage as well. I love my history. I also have a channel on YouTube about the history of Shropshire. It just gets my mind active.
Written by: Kelly Simmons
Edited by: Aneurin Read
We would like to thank Kelly for sharing her ataxia discovery journey with us. If you would also like to get involved and share your experience with Ataxia or another rare condition, please get in contact with us through our social media channels or our email.
If you would like to know more about Kelly, you can find their YouTube channel here (Click Here)
Or you can find their TikTok here (Click Here)