23-06-2025
Aberdeen deafblind woman with Usher syndrome finds new independence thanks to charity
An Aberdeen woman with a rare condition that causes deafblindness has shared how she regained her confidence and independence after years of struggle.
Susan Charles, 58, began losing her hearing as a child. Later, her eyesight started to deteriorate.
In 1998, she was diagnosed with Usher syndrome, which causes deafness from birth and retinitis pigmentosa — also known as tunnel vision — which develops over time.
Susan was forced to give up her job in the fishing industry.
And as her vision worsened, she became isolated, anxious and reluctant to leave the safety of her home.
Speaking at the start of Deafblind Awareness Week, she recalled the moment her sight loss became clear.
'My sister noticed one night after we'd been at Weightwatchers.
'It was dark, and I was feeling for the door and the steps
'I asked her, 'Do you see that, the door and the steps?'.
'She said 'yes', and I thought that was strange because I couldn't.'
She added: 'When my mum passed away in 2012, I felt lost.
'I was looking after my dad then, and my sight was getting worse.
'I was using my cane, but I kept looking down and would panic, especially when looking for the kerb.
'I'm scared of kerbs and steps.
'I lacked confidence going out and had become very anxious after a few falls.'
At her lowest point, Susan reached out to North East Sensory Services (NESS), which was then known as Grampian Society for the Blind.
She said: 'I spoke to the NESS social worker about how I was feeling, and she referred me to the rehab workers for cane training.
'The first time I went out with the rehab worker, I was so nervous.'
Over several weeks, Susan slowly built up her confidence, starting with short walks around her building.
Eventually, she was able to take the bus again to visit her dad — a big milestone for her.
She has also received support from NESS with technology and daily living aids.
The charity helped her get a magnifier for reading letters and talking kitchen scales so she could bake and cook safely.
'I used to love baking, and I miss it, so I'm trying to do it again,' she said.
'I still cook, but I can't see colours — so I don't know how brown the roast chicken is.
'My husband checks if it's cooked!
'I enjoy doing my washing and housework, but I'm much slower now. I can't pair socks because I can't see the colours.'
Susan said she wanted to encourage others not to ignore the early signs of sensory loss.
'If you are bumping into things or struggling in the dark, go to your doctor,' she said.
'And don't be afraid to contact NESS — there is help out there.'
NESS is an independent local charity that offers support to keep blind and deaf people independent.
