Aberdeen deafblind woman with Usher syndrome finds new independence thanks to charity
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.
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The Independent
2 days ago
- The Independent
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The Sun
2 days ago
- The Sun
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Daily Mirror
5 days ago
- Daily Mirror
'I was told painful toilet sign was menopause, but it wasn't'
Susan Seargent, 56, known to many as Charlie, went to the doctor after suffering with exhaustion, abdominal pain and recurring UTIs in 2020 A woman who was told her exhaustion was due to the stress of being a teacher was diagnosed with stage three cancer. Susan Seargent, 56, known as Charlie, sought medical advice after experiencing exhaustion, abdominal pain and recurring UTIs in 2020. She was reassured that she was going through the menopause and that her symptoms were also linked to the stress of her teaching job. She was fitted with a Mirena coil and began hormone replacement therapy (HRT) to alleviate the symptoms. However, during a trip to Norfolk with her husband Peter, 53, in February 2023, Susan found herself needing to urinate frequently, then struggling to do so at other times. Scans revealed a 17cm cyst and she underwent an emergency hysterectomy. But, six weeks later, doctors confirmed it was stage three endometrial cancer, which had spread. After undergoing six rounds of chemotherapy, Susan is now in remission and raising funds for cancer charities. Susan, from Lower Hartshay, Derbyshire, said: "I don't blame anyone. But looking back, I now see how all those little things, the fatigue, the UTIs, the pain after eating, were pointing to something more serious. "Menopause is finally being taken seriously, which is so important. But I do think we need more awareness that not everything is the menopause. Some symptoms can be signs of something else." Primary school teacher Susan began seeking medical advice for her symptoms in 2020, which included recurrent urinary tract infections, abdominal pain, and fatigue. These were largely attributed to the stress of her profession and the hormonal changes associated with menopause. Trusting this diagnosis, Susan had a Mirena coil fitted and commenced hormone replacement therapy (HRT). She recalled: "I even remember doctors increasing the dosage of vaginal oestrogen in my HRT because of the UTIs." However, it wasn't until a trip to Norfolk with her husband Peter during Valentine's week in February 2023 that Susan realised something was seriously amiss. She explained: "We'd walked miles, and I kept needing the toilet every 30 minutes. Then one night, I woke up needing to go and just couldn't. The pain was excruciating." Following an emergency hospital visit where she was fitted with a catheter, scans revealed a 17cm cyst when her symptoms failed to improve. Showing her resilience, Susan humorously named it "Cedric the cyst". She underwent an emergency full hysterectomy and, six weeks later, received the devastating news that it was cancer. She said: "They said it was a low chance it would be anything serious. But it was stage three and had already spread to the outside lining of my uterus, in the fluid and right ovary, which they found after the peritoneal washing. It was very hard to hear." Susan was referred to oncology and underwent six rounds of chemotherapy, from August to September 2023, each round lasting six-and-a-half hours. Despite losing her hair and strength, she refused to let the diagnosis define her. To maintain a positive outlook, she set herself a challenge: walking the Limestone Way whilst undergoing treatment. She said: "I was sick, wearing a bobbly hat, holding walking poles and being overtaken by everyone. But I kept going. It helped my mental health, and people started telling me my story inspired them to get outdoors too." It wasn't until after her cancer treatment had concluded that Susan saw a menopause specialist. She said: "I finally got an appointment, two years after being referred, and this was unfortunately after my hysterectomy and chemotherapy. The specialist just said, 'I'm so sorry I'm only just seeing you now.' It was just too late." The cancer had progressed to stage 3. Susan is of the belief that if she had seen the menopause specialist earlier and had a smear test sooner, they could have potentially discovered it before it reached this stage. When women reach the age of 50, the smear test is every five years, however Susan's last smear test was in 2019 and her cancer was detected and diagnosed in 2023. Now on the road to recovery, she's planning to cycle 56 miles in the Chris Hoy Tour de 4 on September 7, using an electric bike as part of her ongoing healing journey. She said: "I've had 'Cedric the cyst' removed, and 'Hetty the hernia' too and this is the next step for me." Susan is planning to raise awareness and fundraise for the Children's Cancer Unit Charity, inspired by her 19 year old daughter Martha's primary school friend, who also battled cancer in primary school. Susan said: "When you think of how tough cancer is as an adult and then imagine a 10 or 11 year-old going through it, it's just heart-breaking. That's why I'm doing this."
