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Frequently Asked Questions

Do you have questions? Well, I (hopefully) have answers! As someone with Usher syndrome, I’m used to being asked a bunch of questions about my condition. Actually, I welcome questions! The more knowledge people have, the better, right? So, below are some of the things I’ve been asked the most. Whether you’re looking for personal experiences or are just curious, you’re in the right place.

I have Type 2A (USH2A). I was born severely deaf and later diagnosed with Retinitis Pigmentosa at 19.

Nope, I’m the only one! Like many others with Usher syndrome, we’d never even heard of the condition until I was diagnosed with it.

Unfortunately, no. I’d started driving lessons not long before my diagnosis. My ophthalmologist informed me that I would be unable to continue driving as my peripheral vision range (10°) was well below the legal minimum for the UK (120°).

Yes! I’m very lucky to work in a career that I love – I’m a full-time graphic designer and have been for eight years. At the moment, I’m able to do my job without any specific assistive technology but there are adaptations I make in my day-to-day life that make it easier for me. For example, I work on a large screen where I struggle to see the entire monitor. However, by using multiple smaller windows instead of one large one, I’m still able to efficiently work. Another example is something as simple as slightly increasing the size of my mouse pointer and display icons. Most modern devices have endless accessibility options – it’s worth taking the time to explore them and find out what works for you.

I’m also blessed by the existence of Access to Work, who fund transport to and from work for me, enabling me to safely get to work despite being unable to drive.

My sight, like many people with Usher syndrome, can vary from day-to-day. I sometimes have what I like to call ‘bad eye days’. On paper, I have 10º peripheral vision, an astigmatism in both eyes and am slightly far-sighted. In reality, however, I can’t see the ground when I’m stood up, I have cobweb-like floaters that drift across my vision (I’m so used to them that I hardly notice them now!), and my vision is near-useless as soon as it gets dull or dark. I also experience photopsia (occasional bright flashes of light in areas of my vision), and my brain sometimes likes to fill in the blanks in my peripheral vision, which sometimes leads to me jumping out of my skin at things that aren’t even there!

Winter can be tough – the dark mornings and dark nights come as a rude awakening every year after enjoying the long days of spring and summer. The endless rain and dull, dreary days aren’t much better, and the darkness makes my peripheral vision feel even more narrowed. Truth be told, I wake up every day with no idea what my eyes are going to be like that day. I take life one day at a time, because I have no other choice.

There’s a quote from Star Wars: The Phantom Menace that I like to try and live by – “Be mindful of the future, but not at the expense of the moment.” (Thanks for that one, Liam Neeson!)

Being born severely deaf, I was given two hearing aids at 11 months old, so they’re all I’ve ever known. I attended routine hearing checks, had new ear moulds fitted whenever I needed them, and everything was pretty okay until I reached adulthood, when I made the transition from Children’s Outpatients to the adults’ audiology department. Being sat in a waiting room of elderly people suddenly made me self conscious of my deafness, as though I was ‘too young’ to be deaf. Dealing with staff who didn’t seem to have the same level of compassion and warmth made it even harder.

I actually insisted on keeping my junior hearing aids for the longest time. On my 21st birthday, I sat crying in an audiology appointment when I was told that I had no choice but to put up with new, adult NHS hearing aids despite the fact that I hated how they looked and sounded, because my junior ones were no longer in production and I’d be stuck if they broke.

I hated it so much that I actually paid privately for a hearing test and hearing aids. I’m very privileged to be in a position where I have that choice, and even more privileged that my wonderful sister-in-law works for a private hearing clinic. My new hearing aids are smaller than I ever imagined would be possible (not to mention bluetooth!) and I no longer have to wear full in-ear moulds. There was also something so incredibly surreal about being twenty-five years old and hearing new sounds for the first time. From simple things like the way the letter ‘s’ sounded and my own hair brushing against my ear, to things as bizarre as hearing the humming of the fridge at work!

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USHthis UK Summer Camp 2024

On Sunday 4th August, I travelled from South Yorkshire to Windermere for the annual UK USHthis Summer Camp.