Rachel Foley

Meet our community: Rachael Foley

Rachael first noticed she had sight problems at the age of 15. She went to her local eye clinic, who said she had an astigmatism.

After some eye tests at her local eye department, she was told she had retinitis pigmentosa (RP) and was going to go blind. That didn’t stop her.

When she was 16 she went to college for three years studying for a GNVQ (intermediate and advanced level) in leisure and tourism. She then worked at a travel agent, selling holidays.

In 2002 she got a job in her local council as a clerical assistant, working her way up to the position of domestic abuse coordinator in 2008. She was in this position for five years and loved it.

In 2012, she went for genetic testing as she was hoping to have children. That was when she was found to have Bardet-Biedl Syndrome (in which sight loss is one element). Her genetic diagnosis of BBS1 put a lot of things “into perspective” for her.

In 2016 her unit restructured, and the position they offered wasn’t suitable for someone who was losing their sight. She asked for early retirement due to her health and deteriorating sight and in 2017 she eventually got the green light and her pension.

She then threw herself into volunteering, visiting her first Bardet Biedl Syndrome clinic in Northampton where she met a lot of people with her condition. She became an observer on the board with BBS UK, then a full trustee in 2018 (a role she still holds to this day).

In 2020 she applied to volunteer for Retina UK, but couldn’t get the position until after lockdown in 2021. She said it has really helped her to be a voice for blind and partially sighted people within her local community, as well as helping others.