11/06/2026
โMy older sister has Usher Syndrome, so it was always in the back of my mind whether I could have it too. But still, when my fears were finally confirmed it felt like my life had been turned upside down.โ
Victoria, 40, was born deaf, but it wasnโt until the age of 22 that she was diagnosed with Usher Syndrome; a rare inherited condition affecting around 10,000 people in the UK and is the leading genetic cause of deafblindness. The news was devastating.
"I had just finished university the week before and suddenly it was like my future was being taken from me. I was crying all the time, and I didnโt go back to the hospital for five years. I was determined to go on living my life for as long as I could before my vision diminished.
โIโve always been proudly independent. But, at the age of 27 I went back to the hospital because things were getting worse, and by 29, while pregnant with my first child, I made the difficult decision to stop driving.
โEver since, as a busy, working mum of two, I have relied on a disability entitlement through my local authority to help pay for travel, such as taxis, to go about daily life. But two years ago, I was told that support would stop overnight.
โIt was like having the rug pulled out from under me all over again. Suddenly, my independence was being taken away for no clear reason. I was a mess and didnโt know where to turn to.
โThatโs when I discovered Deafblind UK. I called the helpline and the wonderful Angela answered. She told me that she also has Usher Syndrome and listened patiently while I offloaded for what must have been 90 minutes. She answered my questions and explained the responsibilities of the council as well as my right to a deafblind assessment. I had been doubting myself, so it was such a relief to leave that first call feeling really positive and determined to keep fighting for the support Iโm entitled to.
โFinally, it felt like there was someone who understood; someone who was in my corner.
โIt has taken two years to secure a deafblind assessment and have my travel entitlement restored, and Deafblind UK has been there throughout. Whenever I encountered setbacks and I felt like giving up, they were there for me, offering the advice and understanding I needed to keep going.โ
We wish to thank Victoria for sharing her story and being the face of our Deafblind UK Helpline Appeal. With your donations, we can continue to be there for people like Victoria when they need us most. Help us answer the next urgent call.
Learn more about the Helpline Appeal at deafblind.org.uk/helpline-appeal
If your life is being impacted by sight and hearing loss, call the Deafblind UK helpline on 0800 132320, or visit deafblind.org.uk/get-support