A WOKING teenager who is losing her sight because of a rare genetic condition is sharing her story to help a vision research charity.

Rose Roberts, 15, was diagnosed with Stargardt macular dystrophy when she was seven. She now has no central vision, having to rely on peripheral sight.

Rose is taking part in “20 voices for 2020” for the charity The Fight for Sight to raise awareness of the personal impact of sight loss and the possibilities of science to make a difference.

She said: “When you suffer from an eye condition it’s not only your vision that’s impaired, it’s your ability to live your life as easily as others.

“Other people don’t realise how much they should treasure their eyesight until something happens to it. Eye research brings hope of new treatments to people with eye conditions.”

Rose says she gets a lot of support at school, puts in a lot of work and has joined several activities, including the band and drama group.

“I don’t let it hold me back. It’s not going to change, so I just have to deal with it.”

She is currently studying for her GCSEs and will be in a room without other students where she will have help, including someone to read text to her.

The “20 Voices” initiative is part of Fight for Sight’s wider 2020 campaign, which will include a major research study showing the economic and personal impact of sight loss. The findings, which are due to be published in July, will be used to lobby decision-makers and funding bodies for a national plan on sight.

The charity helps to fund more than 150 research projects at 42 universities and hospitals across the country.

Rubina Ahmed, head of research at Fight for Sight, said: “We believe 2020 is the right time for us all to be investing more in new therapies to treat eye conditions, many of which are already stopping sight loss and blindness at clinical trial.

Dr Ahmed said that only 1% of national funding goes on eye research, but that 20% of people in the country will experience serious sight loss or blindness.

“If we can close the ‘1 to 20’ research funding gap, we can help so many more people like Rose,” she said.

For the full story get the 6 February edition of the News & Mail