As Deafblind Awareness Week comes to a close, we are highlighting the work of Joanne Milne, the founder of the incredibly important organisation, Cure Usher. Jo works tirelessly in her passion for a search for a cure. Alongside trying to find a cure, Jo strives to ensure that the voices of those living with Usher syndrome are heard. Carry on reading to learn more about Jo’s work with Cure Usher.
Before we dive into Jo’s feature for Signature, here is some more information on what Usher Syndrome is:
- Usher Syndrome is a rare genetic condition. There are currently 3 types of Usher Syndrome- Type 1, Type 2, and Type 3. Usher Syndrome causes dual sensory loss. A combination of hearing and vision loss. In some cases, it can affect a persons balance. Vision loss in people diagnosed with Usher Syndrome is caused by Retinitis Pigmentosa (RP) which is a disease of the retina cells in the back of the eye, which affect light sensitivity. RP tends to start with night blindness and go on to cause tunnel vision (Cure Usher).
The different types of Usher Syndrome:
- Type 1: With Usher syndrome Type 1, hearing loss tends to occur from birth. It is usually severe- profound. Vision loss tends to begin around the age of 10 and balance problems can occur from birth.
- Type 2: In Usher Syndrome Type 2, hearing loss tends to occur from birth. It is usually moderate-severe. Vision loss usually begins in mid-late teens. With Usher Syndrome Type 2 there are no balance problems.
- Type 3: In Usher Syndrome Type 3, the hearing loss is progressive. It tends to be normal at birth. Vision loss usually begins mid-teens. Balance problems with Usher Type 3 are variable.
- Hi Jo, first, could you introduce yourself to our Signature readers?
Hi everyone, my name is Jo- I was born profoundly deaf and started wearing hearing aids at 2 years old. I went to mainstream school, and I have great friends- a mix of hearing and those who use BSL, and we have always socialised together.
- Can you expand on your personal experience with Usher Syndrome?
I have always been proud of my deaf identity, but to then accept and adapt to life with a progressive sight loss too is challenging, my peripheral vision has been gradually curtailed so that I now have just 5% central vision left.
This precious small window still allows me to see the world, but I have to scan and prepare so much more than you might think. It is so difficult when you are deaf too and that’s why I decided to have cochlear implants 10 years ago.
There’s over 11,000 people in the UK living with the condition- but the public and professional awareness is so very low.
It can feel lonely and isolating, it is only those fortunate enough to be surrounded by supportive family- we get through this. Imagine for a moment, as a parent being told your child has a condition you have never heard of.
Imagine how I felt when I was about to give birth, and tried to explain again, to yet another healthcare professional what Usher Syndrome was.
- Why is it so important that TV shows like Eastenders share stories similar to yours?
When I was first diagnosed, my family hadn’t heard of Usher Syndrome. My family doctor. Friends. Everyone. So, for a popular programme like Eastenders to be the trailblazers by having a character with the syndrome sparks that national conversation. We can say that’s me. The character wears hearing aids, she doesn’t use a cane because she is still a child- and actually may not use one till she’s older as her sight loss progresses. That in itself raises huge awareness. The Usher Syndrome community around the world, as I was, were so pleased to have such an important issue, our condition, mentioned to millions of viewers. Let’s hope the future brings more positive media representation, and perhaps even encourage more actors with dual-sensory sensory loss to take this route.
- Can you explain some of the work that Cure Usher Syndrome does to raise awareness?
I founded Cure Usher Syndrome pre-pandemic, my life’s work in the non-profit sector, my life living with Usher Syndrome and then when I had my own family, further confirmed the need to create a charity specifically to raise first- awareness of Usher Syndrome and secondly- much needed funds for research into a cure.
We are constantly pushing for a change, we are talking to the right people in Parliament and Government, sharing our stories. Communicating.
Those living with this condition are the subject matter experts. Our parents and loved ones too.
Diagnosis is the start, and it should be at the start alongside newborn screening- and then we can be better placed for support and treatment options. Healthcare professionals certainly need to be better equipped to understand our condition too.
We focus on trying to avoid the diagnostic odyssey- to explain that- it’s a term for explaining the long and difficult journey patients and their families endure to receive an accurate diagnosis- often taking several years.
- What are some of the biggest challenges that you have faced running the Cure Usher Syndrome organisation?
Like many charities, it is always fundraising, and we rely on our wonderful fundraisers and supporters to enable us to fund research and continue to champion our awareness raising. We are a team of volunteers, a Board of 10 Trustees who all give their free time and expertise and it’s wonderful as we wouldn’t be able to do it without them. I can’t praise the whole team enough.
- Since setting up the charity, what changes have you seen been made?
Momentum is building- We are definitely getting heard and it is about time too. We have to be mindful of the term deafblindness when vision loss hasn’t started- it is a progressive condition. It is astonishing how a lot of people don’t even realise the red stripes on a mobility cane or checkers on a guide dog’s harness means the user has a hearing loss too.
Additionally, since Laura Norton and Mark Jordon have recently come on board at the charity- following the Usher Syndrome diagnosis of their two beautiful children- and being actors, themselves means their huge media presence is certainly helping push awareness to limits never known before. Their dedication is humbling.
- Going forward, do you have any goals that you would like to achieve with Cure Usher Syndrome?
We are working across all platforms, to spark conversations around policy change and better support pathways at all stages in our lives and ultimately, carry on funding research for Retinitis Pigmentosa- the sight loss associated with Usher Syndrome.
- In what ways can individuals or communities get involved or support your charity’s cause?
I would like people to have better understanding of how exhausting it is just navigating our surroundings, getting the best accessible formats and access to communication support. We can all help by raising awareness or come up with a fundraising idea, a coffee morning, a sponsored walk- the smallest gesture means so much. To help us educate and to seek justice and respect for the people that live with the condition. I firmly believe to always advocate for the humanity within it and to bring us to the centre of decisions. That’s why it is so important to tell our stories and giving others an insight into our lives, we have a deaf identity, but we are unique- the term deafblindness comes later.
You can find us at Cure Usher, and we are on social media too.
Here at Signature, we would like to thank Jo for taking time out of her tireless work campaigning to share with us some of the important work that her charity, Cure Usher, does in order to highlight this rare genetic condition. Cure Usher funds leading research while simultaneously supporting individuals and families of those affected by the condition. We wish Jo the best of luck in her advocation for Usher Syndrome, a condition that should not go unnoticed.
