Gail has a tumour surrounding her optic nerve; she has no sight at all in her right eye and limited sight in her left. The tumour is growing and so she’s facing surgery to remove it however, doctors have said this may mean she will lose her sight altogether.
Gail met our ELCO at the Queen’s Medical Centre during an Ophthalmology appointment; he referred her to our Peer Support Group.
“I was born prematurely and have an eye condition called retinopathy of prematurity so I’m registered blind.
”I enjoy sport and although school does its best to include me I find it difficult to take part and progress. Playing sport with sighted kids doesn’t give me a level playing field and I always get put in the bottom group in Phys Ed lessons. Just because my eyes don’t work doesn’t mean my body and brain don’t, but people rarely take the time to find out what I can do.
“I first noticed there was something wrong with my sight back in 2004; it was like permanently looking through a fog, so I went to my optician who referred me to a specialist. I knew things were serious when the doctor told me I had to stop driving there and then – that was the first piece of my independence gone.
“I was eventually diagnosed with Retinitis Pigmentosa and my sight slowly deteriorated over eighteen months until I could no longer watch TV and now I can’t see anything at all.
Atiqa aged 25 from Bramcote lost her sight as a teenager due to an accident. She met her My Guide volunteer Carri in 2014. The two get on so well they’ve even been on holiday together!
“I’m quite a confident and outgoing person who wants to enjoy life like most other young people in their 20s.
For the first time in my life I’m being encouraged to have a go!
“I’ve lived with cerebral palsy since birth, but being diagnosed with glaucoma was frightening.
“All my life people have told me I can’t do things because I’m clumsy and because I might hurt myself. Using scissors and paint brushes were always a ‘no-no’ because of my cerebral palsy, so I never had the opportunity to try art and to see what I could d
Elsie aged 69 from Keyworth is registered sight impaired (Partially sighted) due to glaucoma.
“I’d been living with glaucoma for some time and was coping with it, but around three years ago I experienced a sudden and catastrophic deterioration in my sight, which coincided with a change of circumstances in my personal life, which meant I had to adjust to living alone.
Gina was diagnosed with macular degeneration 12 months ago. Here she describes how devastated she was and how a leaflet and a friendly face at the hospital eye clinic was a lifeline when she needed it most.
“After a routine eye test at my local opticians I was prescribed new glasses, but when I got them I thought they weren’t right.
Mark from Wollaton, was diagnosed with Retinitis Pigmentosa in early childhood and slowly lost his sight until at the age of 12 he was registered blind.
“Like a lot of people in their 50s I’ve always been quite sceptical about technology, dismissing it as being more trouble than it’s worth. It’s also hard when you’re totally blind to find technology that’s easy to use because you can’t see what buttons to press to make it work.
Mike from Bilborough lives with his guide dog Kristal and his visually impaired wife Wendy. He was diagnosed with Retrolental Fibroplasias in early childhood and is registered blind.
“I’ve always had a vision impairment but I lost my sight totally in 1992 when I took the drastic decision to have both my eyes removed due to persistent and violent headaches. I now wear two prosthetic eyes and the headaches have disappeared (except when I have a hangover!).
Norman from Bulwell lives with his wife for whom he is the primary carer although he has a visual impairment he is not registered.
“A few years ago I developed a blind spot in my eyes, I’ve been to lots of opticians and doctors but no one seems to know what’s wrong. I’ve had two falls at home and because I look after my wife when she’s not at the Day Centre I worry in case I can’t look after her properly.
Rob from Mapperley lives with a dual sensory impairment caused by Ushers Syndrome. He is registered partially sighted and wears hearing aids.
“I was diagnosed with Ushers at the age of 30. My vision started to go first; I have tunnel vision so it’s like looking through a pair of binoculars all the time. I’ve also lost my hearing so I wear two hearing aids.
Theresa from Sherwood has macular degeneration, she lives alone since the death of her husband. Here she speaks about the benefit of being matched with James, her My Guide volunteer.
“I was diagnosed with Macular Degeneration about 26 years ago, it was really hard at first but once I got over the shock I managed fairly well to start with, but over the years things got more difficult. First I lost my husband and then I couldn’t keep up the repairs on the home we’d shared so I moved into a small flat. The flat’s easier to manage but I’m now not as familiar with my surrounding are, which is difficult.
Shamaila is in her early 20s and lost her sight at around the age of eight, she plays the paralympic sport of goalball for the Nottingham Sheriffs elite goalball team and also enjoys blind cricket.
“I felt completely excluded from sport at school because of my sight loss, when you can’t see where the ball is to kick it into the goal, hit it was a cricket bat or even pass it to one of your netball teammates, there really is nothing on offer for you at school. I was always told by PE teachers to sit on the sidelines because they really didn’t know what to do with me in lessons.
Paul aged 42 from Nottingham was diagnosed with retinitis pigmentosa four years ago and is registered blind.
“When I was diagnosed with an incurable, degenerative sight condition my world changed forever.