Let’s talk about diagnosis… with Sarah – Ataxia

Let’s talk about diagnosis… with Sarah

Let’s talk about diagnosis… with Sarah

Post Published: September 23, 2020

It took Sarah nine years to be diagnosed, and throughout her time at primary school she was called a liar by teachers. Here’s Sarah’s story.

I have episodic ataxia type 2 and my diagnosis process was intense. I was diagnosed at 16 years old after first displaying symptoms at 7 years old. My parents took me to the GP when I was one years old as they noticed I kept falling over in my cot. However, this problem ‘appeared’ to go away with a change in milk thickener. In hindsight, this symptom and the frequent vomiting was very similar to later ataxia episodes I experience.

At primary school, when I was initially displaying symptoms, I was told I was faking it. This made me feel very confused. I felt that I must be making up my symptoms as adults were telling me so. I remember sitting in the playground talking to my friend about how much I was dreading the upcoming PE lesson because I might be ill. I was angry at the adults around me for not listening.

One PE lesson, we had a new teacher there watching. I started to feel ill and thought I would tell her, as if I told my class teacher, he would force me to carry on. This new teacher allowed me to sit out until my class teacher spotted me and made me get up and join in. With the same teacher, I vividly remember feeling ill in a cricket lesson and being told to run after I had hit the ball. I fell over because of how dizzy I was. He told me to stop messing about and spoke to my mum at the end of the day. I got in trouble for ‘misbehaving’ at school. No one could see how bad I really felt. 

At secondary school, I was sick every time I exercised, so my PE teachers recommended I go to the doctors. I began with my GP who passed it off as migraines, more than once. Then eventually, when issues with my balance occurred, I was referred to Great Ormond Street Hospital (GOSH). There I had numerous MRIs, investigations into my heart, stomach, ears and various other body parts.

I guess I didn’t really understand the diagnosis process completely so part of me was just pleased I got to have days off school. Then on the other hand, it was overwhelming and frustrating. I don’t remember finding anything scary. I just felt so desperate to know what was wrong, and annoyed that no one could tell me.

It was a consultant in the audiology department who suggested I have genetic testing, which led to my diagnosis of ataxia. I feel frustrated as a young adult because since my diagnosis, the attention and frequency of my appointments all stopped. I see a neurologist on a yearly basis but so much can change within that time! 

Now at the age of 25, I am trialling medications with limited success so far, but I’m proud to be a teacher, even with the daily battle of ataxia.

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