By HAYLEY RICHARDSON FOR MAILONLINE
PUBLISHED: 04:00 EDT, 31 March 2021 | UPDATED: 12:01 EDT, 2 April 2021
Our eyes are one of the most important organs in our bodies, enabling us to see the world, go about our daily lives and connect with our surroundings.
Despite essential eye services continuing to operate throughout the pandemic, thousands of eye appointments have been missed over the past year due to Covid-19. As a result people may have missed out on referrals and treatment for conditions including wet age-related macular degeneration (wet AMD), which can lead to vision loss if untreated (1,2,3).
For those living with wet AMD, right now it’s more important than ever that they take a proactive approach to managing their disease.
While living with wet AMD can be very difficult, there are steps you can take to better manage it and maintain vision and independence for longer.
To empower those living with wet AMD – and their caregivers – to take an active role in managing their disease in these uncertain times, Novartis Pharmaceuticals UK Ltd has launched See What’s Next. See What’s Next is a disease awareness campaign developed with the support of the Macular Society, to provide practical resources and tips as well as first-hand advice from inspirational individuals living with wet AMD.
These include 90-year-old Pat, who developed wet AMD 20 years after being diagnosed with dry AMD in 1990, and has found ways to adjust his day-to-day life to maintain a sense of autonomy.
Pat, 90, pictured, developed wet AMD 20 years after being diagnosed with dry AMD in 1990
WHAT IS WET AMD AND HOW COMMON IS IT?
Age-related macular degeneration (AMD) is the leading cause of avoidable sight loss in the UK(3), with up to 40,000 people developing the ‘wet’ form every year(4).
Wet AMD is a long-term, degenerative eye disease most prevalent among people aged over 50 that affects a person’s sight, often making it blurry or distorted, or causing gaps or dark spots in central vision(5,6).
THE COMMON SYMPTOMS OF WET AMD YOU NEED TO KNOW ABOUT
- Finding bright light glaring and uncomfortable.
- Finding it difficult to adapt when moving from dark to light environments.
- Distorted or blurry vision.
- Straight lines such as door frames may appear distorted or bent.
- Empty gaps or dark spots in central vision.
- Incorrect perception of colours, often appearing less bright than they used to.
- Objects in front of you appearing to be the wrong size, shape or colour.
If you haven’t been diagnosed with AMD but are experiencing any of the above symptoms, you should visit your local opticians as soon as possible.
Information from Macular Society(6)
While AMD doesn’t cause total blindness, it can make everyday activities like reading and recognising faces difficult(5).
There are two different types of AMD; the ‘dry’ kind is a gradual deterioration of the macula as the retinal cells die off and are not renewed(7).
The other form is wet AMD, which can develop suddenly and rapidly worsen, often in weeks or months(5,6). It’s caused by the growth of abnormal blood vessels at the back of the eyes(6). Around 10-15 per cent of people with dry AMD also develop wet AMD(7).
Wet AMD sufferers may need regular eye injections – and on occasion a light treatment called photodynamic therapy(8) – to prevent vision from deteriorating.
Although there’s currently no cure(9), if untreated, wet AMD can worsen over time and lead to vision loss(6) which can have a devastating impact on the sufferer’s independence.
Consistent treatment and regular monitoring of fluid and blood in the back of the eye could help slow down the progression of wet AMD(10). This, along with lifestyle modifications, could allow people living with the disease to remain independent for longer(9).
Having a meaningful conversation with your eye specialist about how you can manage your condition and maintain your vision is one of the best things you can do.
The See What’s Next website hosts a short questionnaire, which based on responses produces a tailored discussion guide including helpful questions to allows people with wet AMD and their caregivers to maximise the time with their eye specialist at virtual or in-person appointments.
If you are experiencing symptoms or notice a sudden change in your vision, it’s important to call your clinic and make sure you get an appointment as soon as possible.
Thankfully Pat was able to see his eye specialist in July last year, so he doesn’t feel he’s been directly affected by the pandemic in terms of his disease management.
PAT’S PRACTICAL TOP TIPS FOR LIVING WITH WET AMD
While Pat can no longer get behind the wheel, recognise faces or read a regular book, his morale has remained high
At his final medical check-up before retirement in 1990, Pat was told he had dry AMD, and almost immediately he signed up to the Macular Society. As a result he was aware his condition could develop into wet AMD.
For 20 years he proactively checked whether he could pass the eyesight test to drive – and when the time came that he couldn’t, he went to see a specialist who confirmed he had developed wet AMD.
While Pat can no longer get behind the wheel, recognise faces or read a regular book without visual aids, his morale has remained high, and with the help of his wife, he’s found ways to adjust his life to cope with the disease. Here he shares his household tips and day-to-day ideas for people with wet AMD.
ALWAYS USE GOOD LIGHTING
Navigating your home can become challenging when living with AMD. When your vision is impaired, you may need to find ways to help you walk down stairs, set an oven or microwave timer or avoid bumping into your coffee table.
Swap to brighter bulbs around the house and add lights, such as a lamp with a long, flexible neck, to help with activities such as reading. Experiment with various types of bulbs to find one that suits you for each particular activity.
Keep all stairs well lit with night lights and consider leaving a corridor light on when you go to bed, especially during winter months when it’s darker for longer.
Keep small LED penlights or torches nearby for everyday tasks, such as looking in kitchen cupboards or wardrobes.
INTRODUCE CONTRASTING COLOURS
To help you navigate your home and conduct basic tasks, try to introduce contrasting colours. For example, if you struggle putting white toothpaste onto a white toothbrush, get either a blue toothbrush or blue toothpaste. Alternatively, you might find it easier to put the toothpaste straight in your mouth rather than on the toothbrush.
If your kitchen is painted white, use a different colour paint to outline electrical sockets and light switches, or use a piece of coloured tape in the same area.
In the living room, place a brightly coloured blanket or pillow at each end of the sofa. You can also line the edge of stairs with brightly coloured tape or paint.
If you struggle putting white toothpaste onto a white toothbrush, get either a blue toothbrush or blue toothpaste
CREATE LARGE PRINT LABELS AND USE SELF-ADHESIVE STICKERS
Using a sticky note or another type of adhesive paper, make bright-coloured labels with a large font for things like medicine bottles, spice containers and the folders you use for financial and medical records.
Print emergency contact lists in a large size font and put them in an obvious place, such as on the fridge or the family noticeboard.
Buy self-adhesive stickers of different shapes, materials and colours to mark a variety of objects so that you can easily identify them.
By sticking them onto objects such as the TV remote control, microwave, house keys or kitchen appliances, you’ll be able to differentiate between different buttons or objects more easily.
CLEAR AWAY CLUTTER
Pat recommends maintaining an orderly way of living, ensuring you know where everything is kept around the home.
Navigating around furniture or other household items can be more challenging with AMD. Consider your home and the space you have to move around – particularly your path to key areas of the house.
Try to keep everything in its designated place; keep objects off the floor to reduce the risk of tripping, and keep corridors or doorways void of any obstructions. If it feels a little cluttered, consider donating furniture to charity.
EMBRACE TECHNOLOGY
Pat’s eyesight has worsened over the past year and he has become even more dependent on technology
Technology can really help with problems caused by AMD. For example, Pat uses hand magnifiers as well as software on his computer, which enable him to read almost anything.
Pat’s eyesight has worsened over the past year and he has become even more dependent on technology – particularly his tablet which reads aloud to him.
He also uses a talking watch, a screen reader and other text-to-speech software, and a device that beeps to tell you when to stop pouring boiling water into a mug or a light coloured liquid into a clear glass, as it can be difficult to see the level in the receptacle.
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