We are delighted to share your stories of living with nystagmus to help raise awareness.
You can share your story here
This is Ella’s story …
Ella was first diagnosed with nystagmus at 3 months old. A routine check-up at the doctor’s turned into something completely different. The doctor told us she had nystagmus (this is caused by Oculocutaneous Albinism) but didn’t elaborate any further other than to say she would be referred to the eye hospital and she might not be able to see very well. As new parents this was frightening and very upsetting. We did have lots of support from the hospital and the Nystagmus Network who have been amazing. The helpline has made all the difference. Talking to someone who understands our feelings and just to listen to us.
Ella is now 4 years old and will be starting school in September. She is amazing beyond words. She participated last year in a dance show in front of a large audience, takes dance and swimming classes regularly, loves going on her scooter everywhere and she does not let anything hold her back. Her 8-month-old sister was also diagnosed recently and Ella said to us: “Well me and Lola will be able to talk to each other about it and support each other”.
Very proud parents.
