Amy: living with Usher Syndrome

Post date: 
Thursday, 1 March 2018
Amy and Bingo

Connect member, Amy, shares her moving experience of living with Usher Syndrome, which was diagnosed when she was a teenager. She tells us how she was bullied at college and has now found a true friend in her guide dog, Bingo. 

It feels like only yesterday that I was a carefree, happy, young woman enjoying life; and then it just flipped... like that. I remember life when I didn’t need to use my fingers to find where I am. I miss my old days.

I grew up in my teen years needing glasses. Without my glasses, I’m in a world of blurry faces and places. I thought I was only going to be short sighted; until this cruel eye disease took my eyesight...

I remembered Specsavers transferred me to the Sunderland Eye Infirmary because their concern was I had too many floaters. I already have hearing loss from birth and now I was worrying about my eye sight.

In 2013 I was diagnosed with Usher Syndrome, Type 2, at the age of 17. I broke down and cried because it wasn’t what I expected; it changed my future, I was planning a career as a make-up artist. But when my friends at college found out about my diagnosis, they bullied me and told other girls to stay away from me; so I left college. I became very depressed, full of anxiety. My mum gave up work and became my carer. I was suicidal.

In 2014 my doctor told me there was leakage in my left eye. I remembered sitting, staring at the wall, feeling faint because the doctor was explaining about macular eye injections. I went through a year on a human trial and received macular injections every 4 weeks. I pushed myself through all 12 injections or I could have lost my sight. It was traumatic; I was terrified; and I was only 19, but I did it.

I had so many days wishing I was a normal teenager, I forgot what it was like to live with no worries.

The macular injections I received have kept me stable for nearly two years. I’m 22 now and I’ve come to terms with my condition but I still worry about going blind.

In December 2017 I was diagnosed with scoliosis (the spine twists and curves to the side). To control my scoliosis I have to work out three times a week at the gym and do daily exercises.

Every day I live inside a dark tunnel that I cannot escape; tunnel vision is another part of Usher Syndrome. I am very careful and aware of people and objects around me. It’s exhausting to concentrate on focusing on your surroundings daily. People have even approached me and told me to move out of their way.

Night time turns my tunnel vision into complete blindness; just complete blackness! Night blindness is another part of Usher Syndrome. I can’t do anything for myself in the dark. I can’t see where I’m going, so I hold onto family members for support.

I remembered sitting in bed, trying to look at things around the room. That’s when my fingers became my eyes. I’ve learnt to feel objects to get to my bedroom door. It makes me feel like I am sleep walking and it hurts. I never used to struggle at night, I used to be able to see all the stars in the sky and airplanes flying by; and I miss that.

In 2016 mum got a phone call from Guide Dogs. They had found a match! A lovely, golden Labrador Retriever cross. He is a handsome boy, with big brown eyes, called Bingo. I had never heard the name Bingo before, but I love it because it’s so unique. It took me a year to get used to training with Bingo.

He has never left my side since day one.

Become part of our growing community of people affected by sight loss and you will receive more great stories like these

More from RNIB Connect