Khadeja Ali

Meet our volunteers: Steve and Khadeja

Steve has been volunteering for Retina UK since its formation in 1976 and has been a part of the Helpline team since the early 1980s.

He was part of what was then known as the ‘National Welfare Committee’, which introduced the Helpline. He said: “I just felt that it was important to help and support people who have just been diagnosed.”

Steve is living with a Rod-Cone Dystrophy, one of many inherited sight loss conditions. He was registered blind at the age of 20, completely lost his sight at the age of around 50 and is now in his 70s, still volunteering regularly on the Helpline. Steve remembers very well a caller named Khadeja, who called the Helpline multiple times, following her diagnosis with RP in 1999. Khadeja said “I was in a terrible state, but they were always so understanding and they always listened and were patient with me, despite the fact that I called so many times over that initial period”. She went on to say “It made such a difference having someone to talk to. I was so upset and services like Eye Clinical Liaison Officers (ECLOs) just didn’t exist at that time. Just speaking to the Helpline team, knowing they are living with sight loss but are able to live confidently and do everyday things, it was so reassuring. I felt like I could actually face the future.”

Khadeja went on to join the Helpline team in 2017. She said “I remember the support I got from Steve and the other volunteers and the kindness they showed me and I wanted to do something similar for someone else, to give back.” Steve describes it as “Going full circle from being a service user to volunteering on the Helpline.”

They both said what a thrill it was to meet each other in person at the Retina UK volunteer training weekend in 2019. They love volunteering for Retina UK and being able to offer support to others and signpost information and services available to them.

“Our volunteering is in safe hands” according to Steve.