Macular disease is the biggest cause of blindness in the UK. We find out how it affects people young and old, and what you can do to protect your eyes.
It’s important to protect your sight – we often take our vision for granted. As with all health concerns, eating a healthy diet and exercise are key.
Smoking and sun damage can lead to age-related macular degeneration (AMD), and smokers with a genetic predisposition to AMD are 20 times more likely to get the condition. “Protect your eyes from blue and ultraviolet (UV) light all year round, not just in the summer,” advises Cathy Yelf, chief executive of the Macular Society. And it goes without saying – don’t smoke.
Although it’s not well known, AMD is the most common form of macular disease and affects 600,000 people in the UK. Juvenile macular dystrophies cover a large number of rare, inherited conditions. Some can appear in childhood, but many aren’t diagnosed until later in life. Stargardt disease is the most common form of juvenile macular dystrophy and involves progressive vision loss.
“Many people think sight loss is a usual part of ageing, and people accept they are losing their sight and don’t seek help from medical professionals,” says Cathy. Sight loss isn’t a normal part of ageing and the importance of regular eye tests cannot be emphasised enough. Even if you don’t have any problems with your sight, you should visit the optician every two years as they often pick up underlying problems.
It was at a routine eye examination just before her 32nd birthday that Katie Berrill found out she had problems with her sight. “I’d realised I was struggling to see things in the distance, but I thought I needed glasses. The optician realised something was wrong when he couldn’t correct my vision to 20/20.” Her optician referred her to a local hospital, and four months later Moorfields Eye Hospital London confirmed she had Stargardts.
“I feel very lucky that my Stargardts is late onset and I haven’t experienced a lot of sight loss at the moment,” says Katie. “I need more light to be able to see what I am doing and if I come in from the outside into a dark room of the house, it takes a while for my eyes to settle. My central vision moves around like rippling water.”
There are other side effects: it takes her longer to recognise people and she needs to wear sunglasses even on cloudy days as her eyes are light sensitive. Macular disease a effects people in different ways. Symptoms may develop slowly if you have dry AMD, especially if it only a effects one eye.
However, as the condition progresses, your ability to see clearly will change. Gaps or dark spots (like a smudge on glasses) may appear in your vision, especially first thing in the morning. Objects in front of you might change shape, size, colour or seem to move. Colours can also fade.
You may find bright light glaring and uncomfortable or find it difficult to adapt when moving from dark to light environments. Words might disappear when you are reading. Straight lines such as door frames and lampposts may appear distorted or bent.
“There is also lots of research ongoing into macular disease,” says Cathy. “The Macular Society funds biomedical research so that one day we can overcome macular disease, and have helped fund groundbreaking developments in areas including stem cell treatment.” However, it’s still underfunded: only 0.2% of public funding for research is spent on AMD.
The realisation that your sight is deteriorating is an emotional one, but there is support on hand. “I used the Macular Society phone counselling for around four months,” says Katie. “I spoke to Suzanne two weeks a er my opticians appointment and a er my Moorfields diagnosis around once a week to begin with, then every other.”
Katie had the support of her mum and husband, but professional support was vital to managing her new condition and coming to terms with it. “I honestly don’t know how I would have coped with everything going on at that time if I hadn’t had Suzanne to calm me down regularly and give me reassurance and hope before and after my diagnosis was confirmed,” says Katie. “The genetics counselling service was also brilliant and helpful.”
Her therapist suggested NHS cognitive behavioural therapy, and luckily she was assigned a counsellor after a month. “Having someone to talk to face to face and offload to regularly was much needed,” she says. “I was told that you react to being told you are losing your vision the same way someone grieves for a loved one.
“I’m constantly going through the grieving process. Mine has also been noticed whilst it is still mild, I know that I can’t keep this vision, one day it will be gone and there is nobody out there to help me or cure me. One minute I was OK and the next I was going blind. It is a massive thing to have to deal with and with something that is progressive the road is long and very difficult. The grieving process for me will last years with every new blind spot and every new bit of blurring in my central vision. I don’t want it to go, but I have no choice but to let it and with that comes a lot of grief and sadness.”
Parenting with Stargardt disease makes Katie worry about the future. “I’m constantly worrying about things I may miss as my son gets older. How will I drive him to places if I lose my licence? Will I see him get married? How will I recognise him when he is playing football… That’s why I advise people not to think too far ahead as everyone’s progression is different,” says Katie, who is travelling to Croatia soon and has seeing the Northern Lights on her bucket list.
“I know it’s so easy to think of everything you can’t do, but think of all the things you can do and embrace them. We all adapt as our vision deteriorates, and may just have to do some things differently, but never let your vision get in the way of your hopes and dreams.”
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