Meet our community: Russ Stephenson

Published: 23 March 2023

Russ was diagnosed with Choroideremia at the age of 11, after visiting caves in Spain and not being able to see anything.

He has never been able to see properly in the dark and always thought everybody was the same. He was referred to Birmingham Midland Eye Centre where they confirmed his condition. He now attends yearly appointments at Moorfields Eye Hospital in London.

Russ lives with his partner Donna and guide dog Sparks. He has a son and two grandchildren. He said:

"My family are very understanding of my visual impairment especially my partner who I’ve known since infant school. My mum could never come to terms with my sight loss. She blamed herself and wouldn’t talk about it until she saw me walking into things.”

Volunteering and supporting others

For many years he faced challenges accepting his sight loss and describes himself as having been ‘in a dark place’. But over the past seven years, with the support of his family and Retina UK, the grandfather has come to terms with his visual impairment and made many positive changes to his life.

Russ has received support through Retina UK’s talk and support service and attended the charity’s information events and support group meetings, enabling him to meet other people with sight-loss. He said:

“It has helped me accept my own sight-loss and believe you can achieve anything in life. Attending these events and through my job role I now have the confidence to facilitate a Retina support group based in the Birmingham.”

Russ now works as an Eye Clinic Liaison Officer at Birmingham Midland Eye Centre He travels independently by public transport every day.

"The support I have received from Retina UK really helped me accept my sight loss and I believe I can achieve anything in life. It’s a fantastic charity and volunteering for them enables me to help others which is really rewarding.”