Latest news with #UsherSyndrome
BBC News
09-07-2025
- Health
- BBC News
'Tennis helped me come to terms with Usher syndrome diagnosis'
Each year Neil Bamford has to face the reality that his eyesight could deteriorate a little more. At just 19 years old, he was diagnosed with Usher syndrome, a progressive condition that affects hearing, vision and balance."For me it's been so slow - it's that narrowing effect on your life," said the 53-year-old, who now only has partial sight in one eye and uses hearing aids. While he did not realise it at the time, his diagnosis would eventually lead him to a new passion in life, tennis. Neil, from Liverpool, has shared his story as part of BBC North West Tonight's six-part series about living with invisible disabilities and former first aid and lifeguard trainer, who has been wearing hearing aids since the age of six, first started to notice issues with his eye sight when he was 12 years old. But it was another seven years before his diagnosis was confirmed. "It was horrendous, absolutely horrendous," said Neil."My mum went with me and she was crying her eyes out when they told me because, that was the other thing back then, nobody could tell you anything."It would be 'you're going to lose your sight but we can't tell you when'."More than 400,000 people are estimated to have Usher syndrome across the world, according to the Usher Syndrome said he struggled to accept the news: "I just went into denial, isolation and stayed there for an awfully long time."It's thinking, well, I used to be able to do that last year, this summer the sun is affecting me an awful lot more, this winter I'm absolutely dreading it because it will be worse than the last one."Every year I realise something else has progressed." But he said his life began to open up again after discovering Bradbury Fields - a charity which helps blind, and partially sighted people, and those with dual sensory impairments to achieve their the charity, Neil found tennis, which he has credited with helping him come to terms with his condition."I didn't pick up a racket until 2017 and that was just a taster session on these courts. [I'd given] up on sport," he said"Your sight starts to deteriorate, and you think, 'oh, that's it'."As narrow as my life became, when I acknowledged that it was an issue and I sought help, then my life started opening up again."As his love of the sport grew, Neil decided to start competing. "In 2019, I thought 'right I'll give the regionals a go'," he said. "I won the regionals - I was in total shock and I've been competing ever since. "I've been in the GB squad for five years, played at Wimbledon twice. "It's opened so many doors."Neil's story features in a special six-part BBC North West Tonight series about invisible disabilities and conditions. You can watch it on BBC One in the Northwest of England and the Isle of Man from 18:30 BST on Wednesday 9 July. It will also be available on the BBC iPlayer. Listen to the best of BBC Radio Merseyside on Sounds and follow BBC Merseyside on Facebook, X, and Instagram. You can also send story ideas via Whatsapp to 0808 100 2230.
BBC News
07-07-2025
- Health
- BBC News
Blind, Warwick golfer refuses to be bunkered when aiding charity
A deaf and blind woman who has raised more than £400,000 for charity after she was diagnosed with a rare genetic condition says she hopes her efforts will help to find a cure. Debbie White, 60, from Warwick, experienced hearing and sight loss throughout her childhood, however it was not until she was 21, when her younger brother discovered he had Usher Syndrome type II, that she was also diagnosed. Despite it worsening, Ms White has for more than 30 years raised funds for Fight for Sight, a charity supporting research to treat sight she has also been aiding a charity that helped her rediscover her love for golf despite her condition, swinging her way to raising thousands more. Ms White said her diagnosis explained what she experienced during her early life. "It was a Eureka moment," she explained. "I realised then why I'd knocked glasses of water over, or couldn't see in a nightclub, or missed that goal in hockey. "I could understand why it was all happening, I wasn't just clumsy, there was a reason for it."The 60-year-old added that in the 1980s she had made the decision not to have children as she feared they could have experienced similar struggles, however she stressed that science and research were "far better now"."It's by no means a bad thing to have Ushers and you can live a full life, but at the time there was not the research," she hoped that along with her brother, she would be part of the "breakthrough" in new treatments for Usher Syndrome. Ms White's latest event, a charity golf day held at Stoneleigh Deer Park Golf Club on Wednesday, raised £14,800. She said 20% of the proceeds were donated to England and Wales Blind Golf, a charity which helped her rediscover her passion for the sport while her eyesight continued to deteriorate."I played golf until 2006, but gave up as I lost my competitive edge. I can see to hit a ball, but I can see it's flight. "People would say 'your ball is over there' but 'over there' doesn't mean anything to me."Ms White said playing golf with the support of charity helped her mental health and enabled her to meet lots of new friends. The 60-year-old added that she needed to "up her fundraising game" now that she had two charities to support. Follow BBC Coventry & Warwickshire on BBC Sounds, Facebook, X and Instagram.
STV News
23-06-2025
- Health
- STV News
Woman with rare deafblind condition regains independence with charity support
An Aberdeen woman living a rare genetic condition causing both deafness and progressive blindness has credited a north east charity with helping her regain confidence and independence. Susan Charles, 58, was diagnosed with Usher Syndrome in 1998 after experiencing worsening eyesight alongside lifelong hearing loss. Usher Syndrome combines congenital deafness with Retinitis Pigmentosa (RP), which leads to tunnel vision. Susan said she first noticed her vision deteriorating while out with her sister. She said: 'I remember my sister noticed one night after we had been at Weightwatchers. It was dark, and I was feeling for the door and the steps, and my sister said, 'What's wrong?' 'I said: 'I don't know, it's dark', and I asked her, 'Do you see that, the door and the steps?' She said she could see them, and I thought that was weird because I couldn't.' Susan's condition forced her to leave her job in the fishing industry, and over time she became anxious and reluctant to leave her home. 'When my mum passed away in 2012, I just felt lost. I was looking after my dad then, and my sight was getting worse,' she said. 'I was using my cane, but kept looking down and I'd start to panic, looking for the kerb. I'm scared of kerbs, I'm scared of steps. 'I lacked confidence going out and meeting people. I was getting really anxious and had fallen a couple of times.' Susan reached out to North East Sensory Services (NESS), which has supported her for nearly 30 years. Through rehabilitation workers, she received cane training and gradually rebuilt her independence. 'I spoke to the NESS social worker about how I was feeling, and she put me in touch with the rehab workers to do cane training. The first time I went out with the rehab worker, oh my God, I was so nervous.' After weeks of practice, she was able to take the bus alone again. 'I used to take the bus down to my dad's, but I'd stopped because I'd lost confidence and used to panic. 'So the rehab worker trained me to go on the bus, and with the fieldwork assistant, I was able to take the bus down to my dad's house. 'It took about three weeks to build up to that, and it felt like a big achievement. If it wasn't for the rehab worker and fieldwork assistant, I would still be stuck in the house.' Despite ongoing health challenges and worsening sight, Susan remains active at home and is trying to return to baking, one of her favourite hobbies. 'I used to love baking, which I miss, so I'm trying to do it again. I still cook, but I can't identify colours, so I can't tell how brown a roast chicken is, so my husband has to check if the chicken is cooked. 'I'm fine doing things in my own home, I still enjoy doing my washing and my housework, I used to be quick doing things, but now I'm very slow. 'I can't pair socks any more because I can't see the colours. I like having my kitchen to myself on a Sunday. I send my husband and daughter away so I can stay in there myself, so I don't bang into them.' Susan wants others to recognise the early signs of sight loss and seek help without delay. 'I would like to tell people that if you are bothered by banging into little things or finding it difficult at night or in darkness, go and see your doctor. 'These are early indicators of sight loss. And then don't be afraid to go to NESS and get some help.' NESS supports thousands of people with visual and hearing impairments across the north east of Scotland, providing rehabilitation, training, and daily living aids to help maintain independence. Carla Marchbank, statutory services manager at NESS, said: 'Susan's inspiring story highlights some of the major challenges people can face when they are deafblind. It also shows that it can be an ever-changing situation, which is why we encourage people to get in touch with us for support whenever they need to. 'We understand that their condition can change, and how they feel about doing certain things can also change. 'Something that once was possible might start to feel more of a challenge, but we can explore ways of restoring confidence, through new strategies, equipment or training, which help people adapt to their new circumstances.' Get all the latest news from around the country Follow STV News Scan the QR code on your mobile device for all the latest news from around the country
Wales Online
11-06-2025
- Entertainment
- Wales Online
Emmerdale star Laura Norton was reluctant to publicly 'out' her children's Usher Syndrome
Emmerdale star Laura Norton was reluctant to publicly 'out' her children's Usher Syndrome In an interview she explained: "It's a genetic condition which causes hearing and vision loss. Laura Norton has opened up about a 'tough decision' she made about her family (Image: ITV ) Emmerdale's Laura Norton felt she was "outing" her children by going public with their Usher Syndrome before they know about it. The 41-year-old actress and her fiance Mark Jordon - who have spoken openly about how their son Jesse, four, and daughter, Ronnie, two, were born deaf and risk losing their eyesight when they are "around 15" because of the genetic condition - felt they had to talk publicly about it to raise awareness and to "make a difference" by getting people to donate to the Cure Usher Syndrome charity. In an interview with Best magazine, she explained: "It's a genetic condition which causes hearing and vision loss. "Going public was a tough decision because obviously we're kind of outing the children before they know. "But we realised we could never make a difference unless we actively did something. Mark and I are now board members, trustees and patrons of the charity. "In the beginning, it was about our babies. And then you meet other families going through the same thing and it becomes about everyone else. Article continues below "It's such a rare condition and so many people have never heard of it and this community deserves to have people fighting for them and helping raise funds." Laura admitted she has more "purpose" in life because of Jesse and Ronnie's Usher Syndrome. The star - who plays Kerry Wyatt on Emmerdale and met Mark on the ITV1 soap when the 60-year-old actor played Daz Spencer - said: "It's a life mission for me and Mark. "We've both got a job that we love and we feel very lucky to have that, but when something like this comes along and pulls the rug from under your feet, you question it - 'How is this our life?' "But weirdly we both think it was meant to be. I've never felt more purpose in my life." And Laura is glad that he "whole world revolves" around Jesse and Ronnie. Article continues below Asked what difference her and Mark's children have made to Laura's life, she said: "I went and got my nails done the other day and I said to Mark - 'That's the first time in four and a half years!' "I enjoyed it and I didn't feel guilty about it, but I love the thought that I know I'm driving back home to them. "My whole world revolves around them and that's how it should be."
Business Journals
23-04-2025
- Health
- Business Journals
Unstoppable positivity: Living life boldly with Usher syndrome — featuring Rebecca Alexander and VHC Health's Dr. Linda Lang
In this episode of Living Well with Alison Starling, a podcast brought to you by VHC Health and WBJ, Rebecca Alexander shares her experience with Usher Syndrome and VHC Health's Dr. Linda Lang weighs in on managing a difficult diagnosis.
