I can see shapes, but it’s like taking a photo through a greasy lens

Jo Taw
Jo Taw
Dr John Steadman, archivist of Portsmouth History Centre based at Portsmouth Central Library     Picture:  Malcolm Wells

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Jo Taw could be stood in front of a person looking directly at them, but would not be able to tell you what colour their hair was or whether they were wearing glasses.

In fact, the 57-year-old wouldn’t be able to tell you anything about their facial features at all.

Jo is not blind but she has macular disease – a frustrating condition which causes a loss of central vision.

She is one of 500,000 people in the UK with the condition, which makes even the simplest of day-to-day tasks difficult.

‘It’s a challenge,’ says Jo, of Kirby Road, Copnor, Portsmouth.

‘The disease means the macular is damaged – that’s the tiny part of the eye which deals with clarity and detail.

‘So I’ve got peripheral vision and can see shapes and light but nothing is clear. It’s almost like when you take a photo through a really greasy lens. It’s all blurry.’

She adds: ‘I had to give up driving, which was awful.

‘Even in the kitchen you can’t read cans and it makes things like chopping an onion difficult.

‘Going shopping is a challenge too because you can’t read the labels and see prices.

‘And because you can’t drive, people with macular disease have to rely on buses but even that’s difficult because you can’t see them coming. I’ve waved down a fire engine before. Even when you do flag down a bus it’s often the wrong number.

‘It’s all these little things that make it frustrating and difficult to be independent.’

Most people with macular disease are over 60, but it can affect younger people – as was the case with Jo.

She was only 15 years old when she first noticed something was wrong with her sight.

‘I couldn’t see the blackboard properly,’ she says. ‘So I moved closer to the front of the classroom and still couldn’t. I couldn’t see as well all of a sudden.

‘But it wasn’t until I was 18 I was diagnosed with juvenile macular disease.

‘It was quite unheard of back then and there wasn’t much help around. You were left to get on with it.

‘But as much as it’s a challenge, life doesn’t stop after you’re diagnosed. I was determined to carry on and not let it restrict me.’

Despite her condition Jo did went on to meet her husband, have children and pursue an 18-year career as a teacher.

She even became a deputy headteacher until her sight became worse around eight years ago and she took early retirement.

‘I’ve never let it hold me back,’ says Jo. ‘You can lead a normal life, albeit it’s a challenge and can be frustrating.

‘But I think in a sense it was easier for me because I’ve had it from a young age and now I just take it in my stride.

‘It’s harder for people who develop it later in life and go from being able to see everything to suddenly not.

‘It can be very isolating and make you lose your confidence. But there is help available.’

The Macular Disease Society helps set up support groups across the area and groups now run in Portsmouth, Fareham, Waterlooville and Havant – with a new group set to launch in Gosport soon.

In fact, Jo – who also helps to train people with the condition to read with their limited vision – now leads the support group in Portsmouth, which around 30 people attend every month.

She says: ‘I do believe that when people are diagnosed the news doesn’t always sink in – particularly when people are diagnosed and their eyesight is still quite good.

‘However six months down the line and people find they want to talk about it with someone who knows what they are going through, and that’s where the local support group plays a vital role.

‘The Portsmouth group gives people the opportunity to swap stories, experiences and tips and also signposts people on to other services and activities, which gives people the confidence to try new things.

‘By personally visiting people they are able to chat one-to-one with me about their condition – and are often surprised when they find out that I have it too. It’s often a relief to them when they realise that they’re not alone.’

Jo is now urging people with macular disease to not suffer alone and to seek support so they can continue living a full and independent life as possible.

The Macular Disease Society is also urging anyone with visual problems to get them checked out as soon as possible as some may be suitable for treatment.

Tom McInulty, the charity’s group support and development manager for the South, says: ‘The advice from the Macular Disease Society is simple – if you notice any changes in your vision, you should go to your optician immediately.

‘Wavy lines, blurred vision, dark spots and a change in the shape, size or colour of objects directly in front of you are all indications of a potential problem and should be investigated by a specialist.’

He adds: ‘Macular disease can affect anyone at any time, but the vast majority with the condition are over the age of 60 and develop age-related macular degeneration.

‘But because it mainly affects older people, it’s important that people don’t simply associate any changes to their sight with getting older.

‘If you notice any changes, you must see your optician straight away.’

For advice, support, information, or to find your nearest support group, contact the Macular Disease Society’s helpline on 0845 241 2041 or email help@maculardisease.org.

A DVD about the condition, downloadable information sheets and all the latest news and updates about macular disease can also be found on the Macular Disease Society’s website.

Go to maculardisease.org