Gemma smiles for the camera. She has long, very fair hair and wears a dark top and necklace.

Gemma’s nystagmus story

To help raise awareness and understanding of nystagmus, we;re sharing all your stories this Nystagmus Awareness Day.

You can share your story here

This is Gemma’s story …

My name is Gemma and I am 38¬†years old. I have congenital nystagmus. I have 3 children whose vision is perfect so I know I haven’t passed it down to them.¬†

When I was younger nystagmus wasn’t well known and I spent a lot of my childhood visiting the opticians, going to the eye hospital and being given glasses for short sightedness which made no difference. I held everything close up to see and managed school by copying off the child next to me. My hair was white and I have a very pale complexion so I think doctors thought my vision was likely to be down to albinism. I was told as my hair got darker as I got older my eyes would get better … it did not. 

After starting secondary school I had to ask the teacher to read off the board what they were writing so a lot of my school work was done by memorising what they said. Every subject I took further were all practical subjects so art, drama, dance. I went to university and completed a theatre and performance degree. 

I always knew I wouldn’t be able to drive so it’s never really bothered me. I’ve always got by one way or another. 

At the age of 17 I was diagnosed with nystagmus and was classed as partially sighted. At the age of 30 I was then classed as severely sight impaired/blind.

I worked in schools as a learning mentor and a teaching assistant and went on to complete my PGCE to teach. Teaching wasn’t for me and I went on to secure a job as Quality of Education Manager and SENDCo for a large day nursery. I absolutely love my job.

I have always had barrels of confidence and take pride in how much I have achieved despite my visual impairment. There’s a solution to every problem. 

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