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Jo Milne: "Why I want people to see my invisible disability"

  • Watch the latest in our Point of View series here

Jo Milne is deaf and blind. She has Usher syndrome, a rare genetic disorder that affects the vision, hearing and balance of more than 400,000 people worldwide. At present, there is no cure for the condition.

She has worked tirelessly to raise awareness of Usher syndrome as well as fighting to find a cure.

It's this that has seen her nominated for a National Diversity Award.

The awards are to celebrate the new generation of positive role models in the UK.

They honour community heroes tackling issues faced by today's society.

Jo Milne, a mother-of-two from Gateshead, will be at the prestigious event in Liverpool after being shortlisted in the Positive Role Model for Disability category, alongside seven others.

Despite growing up deaf and wearing hearing aids from the age of two, Jo had a happy childhood and said she wasn't treated "any different". In 2014 Jo had cochlear implants, a video of the moment the aids helped her hear was captured on video and shared around the world. She says the impact of the video 'going viral' got people talking about Usher syndrome - a conversation Jo is desperate to continue with her foundation, CUREUsher.

Now married with two children, she fears that if her sight gets any worse, she won't be able to see her children's faces as they grow up.

Jo speaks to ITV News in our new Point of View series. We invite people to share their life experiences - this is her story.

Jo says she lives a fulfilling life despite her condition, and recently got married. Credit: Family photo

Jo is a disability advocate, speaker and published author. She is also deafblind with only 5% vision due to a progressive condition Usher Syndrome.

An emotional YouTube video capturing Jo as her cochlear implants were switched on became one of the world’s most watched internet videos of 2014, touching the hearts of millions around the world.

With over 25 years’ experience, Jo has worked for various charities and possesses an in-depth knowledge of Disability and Human Rights, tirelessly fundraising and often leading campaigns. She organised The Gift of Hearing which involved the distribution of hearing aids to children in Bangladesh, as captured in an award winning TV documentary.

As well as being a busy Mum of two, Jo has also founded her own charity, CUREUsher collaborating with scientists looking to cure the leading cause of deafblindness.

– National Diversity Awards

Jo says she's overwhelmed to receive the nomination, after being shortlisted from 28,000 applicants.

What is Usher syndrome?

A rare and complex genetic disorder that primarily affects three major senses in the body, Usher syndrome is the leading genetic cause of deafblindness that affects approximately 1 in 20,000 people worldwide.

There is no treatment or cure at present. Read more here.

According to The National Eye Institute, treatment can include low vision services, teaching Braille, early intervention (learning support), hearing aids or cochlear implants, teaching sign language or tactile sign language.

Vision: This is caused by a progressive vision disorder known as retinitis pigmentosa (RP). RP causes the light-sensing cells in the retina to gradually deteriorate, initially resulting in night blindness, followed by a narrowing of the visual field, commonly known as tunnel vision.

Hearing: Most children with Usher syndrome are born with moderate to profound hearing loss, depending on the type. Less commonly, hearing loss from Usher syndrome appears during adolescence or later.

Balance: It can also cause severe balance problems due to abnormal development of the vestibular hair cells, sensory cells that detect gravity and head movement.

Jo has travelled to the world with charities to help children with hearing loss Credit: Jo Milne

What causes Usher syndrome?

The condition is inherited, which means that it is passed from parents to a child through genes.

A person with one abnormal Usher gene does not have the disorder but is a carrier who has a 50% chance of passing on the abnormal gene to each child. When two carriers with the same mutated Usher syndrome gene have a child together, each birth has a:

  • one-in-four chance of having a child who neither has Usher syndrome nor is a carrier
  • two-in-four chance of having a child who is an unaffected carrier
  • one-in-four chance of having Usher syndrome

The hearing, balance, and vision of carriers with one mutant Usher gene are typically normal. Carriers are often unaware of their carrier status.

Jo talks about how her condition has progressed over the years, to the point she now only has 5% vision.

What are Jo's plans for the future?

Since launching CUREUsher, Jo wants to continue working in collaboration with scientists, researchers and organisations around the world to spread awareness of Usher syndrome and find a cure.

Jo wants to get more people talking about the condition so that one day, she can experience another 'miracle' and regain her sight.

All week, we're bringing you stories of the inspiring individuals and charities that will also be attending the National Diversity Awards.

Accessible Arts and Media, a charity based in York, which has brought inclusion and diversity to the fore for 37 years, will find out if the have won the Community Organisation Award for Multi-Strand at the event in Liverpool. You can find out more about their story here.

Watch more videos from our Point of View series: