Yahoo News 'It's very emotional' - Jo Milne praises Eastenders for featuring Usher Syndrome storyline
A mum who was born deaf and is losing her sight has praised Eastenders for featuring her condition in a major storyline.
Jo Milne suffers from Usher Syndrome, which causes combined hearing and vision loss. The 49-year-old, from Low Fell, Gateshead, was born deaf and started to lose her eyesight from around the age of nine.
She first hit the headlines 10 years ago when she was fitted with cochlear implants and video footage of her hearing for the very first time went viral.
Jo went on to set up 'Cure Usher Syndrome'. The charity aims to raise awareness of the genetic disorder and fund research to help find a cure, as it currently does not have one.
Earlier this month, BBC soap Eastenders began running a story about Usher Syndrome. In the show, a 12-year-old girl called Britney, who is being looked after by Whitney Dean, is diagnosed with the condition.
Jo said it is the first time in British soap history that Usher Sydrome has been featured in a storyline.
She said: "I have to commend Eastenders for what they've done and for being the first to do that. It's like a moment in history. Already people are saying 'That's that condition Joanne has got'.
"When I first heard about it I was like wow. It's very emotional because everybody's story is different but they are bringing something we can all connect with. It's been so welcome by the community.
"In the storyline, there's a 12-year-old girl and she falls off her bike. The same thing happened to me! It's a very good way to start a conversation. It's nice to be able to say that person has got the condition I have got.
"I have always said that something like this would help raise awareness to the British public. This will reach their living rooms and their families, it will reach our nation.
"I fell like I want to say thank you that it's happened. I really believe that things are going to change now. We hope that this will inspire more stories."
Jo received cochlear implants in 2014, when she was 39 years old. She was filmed as they were switched on following the surgery.
The moving scenes of her being overcome with emotion, on hearing what is said to her for the first time, went viral and led to her becoming an internet sensation.
However, as she was coming to terms with a new wonderful world of sound, she was also suffering from deteriorating eyesight. She talks about the battle to save her vision in her book Breaking the Silence.
Jo met her husband Steve, 49, who previously worked as a paramedic, two years after getting her cochlea implants fitted. They married June 2018 and have two children together - Teddy, six, and Maggie, four.
The mum-of-two describes her decision to get the implants as the "best thing I've ever done". She said: "They have changed my life. The quality of my life is so much better. I can hear the children's footsteps! It's really given me awareness of my environment and my surroundings."
Jo now uses a red and white cane to get around, which signals that she has dual-sensory loss.
She said: "Now I've got 5% vision. Since the implant I'm the happiest I've ever been but my eyes are getting worse. I have got my cane now. That's what has happened in a decade - my vision has deteriorated. I have accepted that there's some things I can't do anymore.
"The only thing I struggle with is mobility, getting from A to B. At home I'm absolutely fine, it's my world and I know where everything is, but outside it's coupled with a lack of awareness. When I go into a shop people don't understand and it can be very exhausting. But it's getting better."
Jo said wanted to use the platform that she was given, following the viral video, to help others with Usher Syndrome. She began the charity in 2018 and runs it with Steve.
The charity has recently managed to secure funding for research into Usher Syndrome at University College London. Steve said: "Finally we have got something, we have got a definitive project that we can get behind 100% and families can get behind 100%.
"We're looking towards trying to persuade the people and sections in Government to represent us and to take sight loss seriously. We want to encourage central Government funding for genetic research. Only 1.5% of the available pot is given to it.
"There's about 11,000 people with Usher Syndrome, 500 in the North East. There's a big community out there."
Emmerdale stars Laura Norton and Mark Jordon have recently became joint patrons of Cure Usher Syndrome after revealing that both of their children had been diagnosed with the condition.
For her ongoing campaigning and charity work, Jo received a Points of Light award from the Prime Minister last year. She has also been invited to the royal garden party at Buckingham Palace next month.
She said: "I'm very proud I have been invited to Buckingham Palace to the Royal Garden Party for outstanding services to Cure Usher. It's been recognised nationally. It's very exciting, it's very humbling."
Jo has urged other people with the condition and their families to get in touch if they need support. She added: "The main thing for individuals and families to know is they're not alone. By contacting Cure Usher Syndrome you have made the first step to knowing you're not alone."
Cure Usher Syndrome hold an annual ball to raise funds for the charity. 'The Cure Usher Ball 2024' will take place at the Hilton Newcastle Gateshead between 7pm and 1am on September 21 this year.
The event will be hosted by Steph McGovern and Joe McElderry will perform. Tickets can be purchased here.
For more information on Usher Syndrome, watch the Cure Usher Syndrome video on YouTube.
