‘I’m about to go blind, just like Judi Dench’

Jane Touil was a bright, outgoing university student when she started struggling to read handwriting sometimes. She thought it was just down to studying hard ahead of her finals, but decided to make an appointment to see her optician, just in case she needed new glasses.

Jane had been diagnosed with Stargardt’s macular dystrophy, a condition for which there is no known cure. It affects the central part of the retina and causes loss of central vision. The macula is part of the retina at the back of the eye. It is only the size of a grain of rice but is responsible for our central vision, most of our colour vision and the fine detail of what we see.

‘My sight was constantly getting worse,’ she says. ‘In my 20s, my first thought when I woke up every morning was always “please don’t let it get any worse” but the reality was it was getting worse every day.

‘My central vision in fact was slowly disappearing. It was a gradual process, nothing sudden or dramatic but it gets to a point where there’s a big drop off – what’s left can’t compensate enough.

‘I had increasing problems, for which I had to develop coping strategies. I confided in friends who helped me over a number of years. When I got sent for medicals for jobs I’d say I’d left my glasses at home so I couldn’t do the sight test. I’d share marking work with colleagues because I couldn’t read exam papers.’

In 1995 Jane’s condition worsened. Now 29, she returned to the UK and after a check-up was instantly registered ‘partially sighted’.

‘On my 30th birthday, when people are usually settled in jobs and relationships, I’d moved back in with my retired parents and the only future I could see was blindness. That was a real low point.

‘I spent hours shut away in my room, crying my heart out. Imagine not being able to recognise your own grandmother in the street. All little old ladies look the same to me. That kind of thing is hard.’

Jane went to the job centre, unsure of what kind of work she’d be able to manage with her deteriorating sight.

She signed up for a course to improve her IT skills. ‘The course trainer was a handsome, friendly man called Moe who helped me enormously,’ Jane recalls. ‘We fell in love and have been married more than 15 years now.’

Despite her disability, the former politics student was able to get on to the career ladder and now works for the Ombudsman’s office investigating complaints against the UK’s National Health Service.

Yet Jane now has a total blank in her central vision. ‘I look at something and it completely disappears,’ she says. ‘If a person is standing a metre away from me, I won’t be able to see their face but I can see the rest of them with my peripheral vision. I constantly move my eyes around so the blank moves and I get a picture.

‘I have good peripheral vision so I have no real problems getting around but I can’t read signs, recognise people or cross roads easily.

‘When I was first given a white stick at the age of 29 I felt very self-conscious if I used it in public. Now I don’t care. If I need it, I’ll use it. I always have it with me but rarely get it out. I call it my magic wand.’

Jane has also received a number of additional resources that enable her to undertake her job successfully. ‘I have a support worker 10 hours a week who sets up files so I know where everything is and she reads to me or reads into a Dictaphone the details of medical records I’m working with.

‘I use a video magnifier where I place the hard copy information on the system and it magnifies it on screen and I have a computer package that magnifies copy and reads it to me. I also have a keyboard with large keys that I can see. I use a mixture of eyes and ears to do my job.’

Jane attends a low-vision clinic, which provides a handheld monocular telescope and anti-glare glasses. At home she has raised dots on the cooker and dishwasher, and extra-bright kitchen lighting.

‘But I’ve picked up other pursuits like gardening. I took over an overgrown allotment when I was unemployed to grow a few things.

‘I’ve always enjoyed walking and have found a hotel in the Lake District that offers sighted guides so I can go to exciting high-level areas knowing I am safe with someone. I have even climbed Mount Kinabalu in Borneo with my husband.

‘It’s a huge irony in my life that my husband’s now registered blind. He had good vision when we met but he’s very short-sighted and unfortunately he’s had a series of eye problems related to it. But we manage together as a team.’

Jane joined the UK’s Macular Society to meet fellow sufferers of and other similar diseases, such as Age-Related Macular Degeneration (ARMD) that actress Dame Judi Dench has been diagnosed with.

All patients with this form of condition will lose some or all of their vision over time. It also has genetic elements but lifestyle issues, such as smoking, can play an aggravating role in its development.

Those with dry ARMD have no treatment available to them as the cells in the macular die. There is just the hope of access to some of the resources Jane uses to improve her quality of daily life. Those suffering from wet ARMD can be offered injections into the eye to halt the progress of the disease but it cannot be reversed and cured.

Oscar winner Judi Dench, 79, who most recently starred in The Second Best Exotic Marigold Hotel, revealed that she has been diagnosed with ARMD and struggles to read film scripts.

She told the Hollywood Reporter: ‘I never want to make much of it, but it is difficult – very, very difficult. I can’t read any more. I can’t paint like I used to. I try to watch movies, but it’s quite difficult. But these are all of the negatives. I don’t want to really think about all that. What I can do, I do. And I somehow get by.’

Referring to Dame Judi’s comments, Jane says, ‘Celebrities have a really positive role to play in raising awareness of conditions like this. It’s so important because people have a very simplistic view of visual impairment –- you’re either blind or can see everything. Actually, there’s a huge range in the middle and I find that attitude intensely irritating.

‘People who tell me “I thought you were blind” when they see me doing something really annoy me, as if they think I’m putting it on. It’s a lack of understanding so if people in the spotlight talk about such conditions, it has to be good.

‘There are plenty of things I can do but I have also spent weeks in my room crying. My life is a struggle every single day but I try to remain positive and do what I can.’

Jane now has total loss of central vision. Her sight could remain stable for the rest of her life. But she knows there is the risk of it deteriorating further as the condition can start attacking the peripheral vision.

She says, ‘Every year I have my annual check-up with my fingers crossed, hoping it’s stable. Knowing others with this condition makes me feel a lot more confident and I’m in control of my life now. It’s a horrific thing, but it’s OK to feel sad and angry – you can’t just give up. I’ve learned that you don’t have to give up on things you enjoy, just adapt.

‘I’m a very sociable person and one of the hardest things to come to terms with has been the lack of spontaneity that’s now possible. I have to plan everything in advance and life is slower and more stressful.’

A good example of how Jane won’t be beaten by losing her sight.

What is macular degeneration?

In macular degeneration, the light-sensing cells of the macula mysteriously malfunction and may over time cease to work. Macular degeneration occurs most often in people over 60, in which case it is called Age Related Macular Degeneration (ARMD). Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease and Sorsby’s Disease.

From The Macular Degeneration Foundation. www.eyesight.org/Macular_Degeneration/FAQ/faq