The mum-of-three from Essex takes calls on our helpline for one shift a week, fitting her volunteering around looking after her family, her job as a social worker and studying at university.
Cindy experienced problems with her sight as a child and was labelled as ‘clumsy’. She didn’t receive any specialist support or fully understand the impact of her retinitis pigmentosa (RP) until she was at university and referred to Moorfields Eye Hospital. Cindy comes from a large family but there was no history of RP.
“At the time I didn’t know anyone with a visual impairment or disability,” she said.
Cindy lost her sight when her youngest son was aged one. She had been told her boys wouldn’t be affected by the condition but this wasn’t to be the case.
“When I was reading Biology at university I did a module in genetics so I asked about inheritance. I was told because there was no family history, there’s no way it was dominant, and my children wouldn’t be affected unless my husband has the same gene,” she said.
“When two of my children were aged six and 11 we found out they both have it. I only got my genetic diagnosis after my boys were diagnosed. We all had the same gene responsible for dominant RP.”
“I first came in contact with Retina UK in 2000 after being told about the charity by Moorfields Eye Hospital. My first experience was attending an annual conference.
“I wanted to volunteer due to my own experience of RP. I had dealt with my sight loss, and my sons’ sight loss, and come through the other side, and I wanted to help someone else with that.”
"Volunteering can fit around what you’ve got on, it’s flexible, interesting and you get to meet other people."
Cindy is currently training to teach social workers and describes her life as ‘very chaotic’, but says her work and volunteering activities complement each other and she likes to be busy.
“When I wanted to apply to be a social worker, volunteering helped as skills developed through volunteering supported the application.
“The training I’ve received at work benefits my volunteering role, such as knowing about the support services available. My life experience helps with my volunteering and work. It all plaits together.”
Cindy says her role on the helpline can be emotionally challenging and that she values Retina UK training weekends.
“You need to be realistic. You are volunteering, but it can be emotionally heavy so you need to be resilient.
“The training weekends are very helpful, they enable you to get a greater understanding of the research side of things and also listen to other people and their experiences.”
“It’s rewarding in so many different ways. You are part of something and talk to people who are on same wavelength, who understand. Retina UK is all about people.”
If you are interested in becoming a Retina UK Volunteer we would love to hear from you. Please visit our volunteering pages or email us on volunteering@RetinaUK.org.uk or call our office on 01280 821334.
