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Living with retinitis pigmentosa in childhood – Anna’s story

A new film by RNIB aims to help people understand how Usher Syndrome can affect children.

Anna is 11 years old and has Usher Syndrome type 1. The main symptoms of Usher Syndrome are hearing loss and an eye condition called retinitis pigmentosa (RP).

Anna has complete loss of peripheral vision and night blindness, so she can’t see in the dark. She also finds it very difficult to transition from light to dark and vice versa.

In the film, Anna’s mum Carol talks about what it was like for their family when Anna was diagnosed, adaptations she has made at home so that Anna can move around safely, and the way they feel about the diagnosis now. Anna’s teacher Miss Fawcett also talks about adjustments they make in the classroom so that Anna can participate fully in lessons, including increasing font size, using coloured pages and iPad software.