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Paige Barnes refuses to let her rare condition hold her back in life.
Diagnosed with Usher syndrome 3 at the age of 17, she has learnt to adapt to life with a condition that has yet to be fully understood.
The 21-year-old, from Surrey, was recognised as profoundly deaf at the age of just one and uses cochlear implants to help her hear more clearly.
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However, it wasn’t until she was studying in sixth form in her teens that she noticed something was not quite right with her sight.
Seeing the writing blurred on the white board, Paige’s mum booked an appointment for the then teen to see an optician at Specsavers.
Despite thinking she was just tired, Paige was later diagnosed with rare Usher Syndrome type 3 and deafblindness – and now has no peripheral vision.
Making up only 2% of cases of the three types of Usher Syndrome, Paige has been left not knowing what to expect for her future – but that is certainly not stopping her from living for it.
Paige is now training to be a hairdresser and barber and, in an exclusive interview with Daily Star, she has candidly told her inspirational story of how she has decided to take life by the reins.
She bravely explained: “During school studying in 6th form around the end of 2017, as a student we rely on white boards with PowerPoints etc… I looked at the screen and noticed a blur on the writing but assumed I was very tired.
“Mum made an appointment with Specsavers to have a check up just in case I needed a new prescription and that’s where it all started.
“I was diagnosed with Usher Syndrome type 3 in January 2018, the diagnosis made me feel shocked, lost in a way that I didn’t know what to think or if there was something I needed to do.
“To this day thinking back, it was almost like a numb feeling.
“My eyesight will deteriorate in the future but because of how rare Type 3 is, there is insufficient evidence to say when that may occur.”
Despite not knowing what the future holds, Paige does not let the condition dictate what she does in life.
Paige said: “Usher syndrome type 3 is the rarest type out of the other types of Usher syndrome and makes up about 2% of all cases.
“People with this type have typical hearing and vision at birth. I try not to think about my condition and I don’t allow it to affect my daily living.
“As I’ve grown with the condition I don’t always appreciate how difficult things are, I tend to miss conversations when in group discussions and prefer talking to people one to one.
“I have no peripheral vision and a few black spots in my centre field. My vision also has an impact as I have had a few falls and trips in the past. I also have to plan ahead thinking about when it will get dark as my condition affects me more in the dark."
Although Paige has to adapt her life, she has refused to let it dampen her spirit.
“At first, I was very shocked and didn’t know what to do or how it would impact my life. I had no clue what it was and the same goes to my family, we had no knowledge of it", she voiced.
“I was devastated about it for a bit, as some things have now been taken away from me such as I will never be able to drive. Being diagnosed at the age of 17 and knowing that I’m old enough to understand was a lot to take into having to accept the diagnosis.
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“I’ve always been active and like to try new things and my parents have always pushed me and told me I can achieve anything. I do let things get on top of me at times but this is normally when I am taken outside of my comfort zone like meeting new people.".
Paige has not let the condition define who she is as her person, and finds strength in her difference.
She said: “I don’t compare myself to others, accept I am who I am and try to make the best life creating memories.
“I decided a long time ago, I could either sit and worry about what my future may be, or get on with it and make the most of every opportunity.
"[I'm] currently studying in college doing barbering and hairdressing. My tutor was very emotional and and through floods of tears told me that when I applied for the course she didn’t think I would be able complete the course as she felt it would be to difficult with my hearing loss and visual impairment.
"However in the short time she had got to know me and see what I can do, she was very proud, thought I was an inspiration and from all her students over her career I would be the most memorable and had the biggest impact on her life.
“At the end of the day, we are human and have no rights to compare myself to others with how perfect people are."
Paige continued: “Facing challenges is normal, people face them every day but differently. When I was diagnosed with Usher Syndrome in 2018, the hospital told me I’ve always had visual impairment but just like my hearing as I’ve grown up with it, I hadn’t taken any notice as I thought that’s how everyone sees.
“So after receiving my diagnosis I thought to myself nothing changed, just because I’ve been given a name of my condition, why should I let it define who I am.
“I was always a happy girl growing up, I just think treat everyday like it’s your last day.
“Life is too short to be worrying about anything.”
Paige is currently raising money for charity SENSE that helps people with complex disabilities.
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