Macular Degeneration

It is a condition that affects central vision creating a blind spot and distorting the surrounding image, leaving sufferers to rely on their peripheral vision.

Andrew’s Story

Andrew is married and has two young children. He has worked within the finance industry for about 30 years.

Andrew has Best disease or vitelliform macular degeneration, which is a genetic form macular Dystrophy. It is what is known as a dry form of macular degeneration. The condition is hereditary. Andrew’s father had it, and Andrew has also passed it on to his daughter.

There are various forms of the condition. For Andrew fluid doesn’t break through at the back of the eye the way it can with other forms of MD, but he does have areas of scar tissue which affect his central vision. He therefore relys on his peripheral vision to get around. Andrew describes the impact on his central vision as being a bit like having a big blob of Vaseline on his glasses and trying to look through that.

Andrew’s condition was first picked up when he was about 9 or 10. Up until the last two or three years it didn’t have a huge impact on his day to day life.

When Andrew was attending school in the 1980s there wasn’t the same level of SEN support as there is now, or the kind of assistance programmes that are now available. He had difficulty reading the blackboard, either close up or far away, and he used a pair of opera glasses, which caused some amusement for his peers. He also used a magnifying glass to read print and was provided with enlarged print exam papers.

Andrew attended Moorfields Eye Hospital, where Professor Jay suggested he learnt touch-typing as in the future everyone would be using computers. This has proved to be a useful skill for Andrew to have. Andrew’s employers have provided him with a dual screen on his computer and paid for a specialist application that helps him to read text on screen. Andrew is aware that there also similar applications already in many computers and these can magnify text (for example: on a PC, using the ‘Windows’ key and the letter ‘U’ will bring up applications that will magnify text and screen size). Andrew has a second standard screen which he needs when showing colleagues things on the computer, as the magnified text isn’t so comfortable for them to read and sight make some people feel ‘sea sick’;. These adaptations have allowed Andrew to continue doing the work he has done all of his life.

Andrew describes how when we speed read or scan read we are usually looking at the first two and last two letters of each word. His condition means that he has to almost spell out the words bit by bit, so he cannot speed or scan read without enlarged font size. With the computer applications Andrew can read much better and more quickly that he could without that assistance. There is also a technique known as eccentric reading, where you don’t look directly at the print, but look slightly above or below it.

Andrew’s condition has had a more dramatic impact on his life over the past few years. He drove a car for 34 years, but has now stopped driving as he can no longer read the number plates. Following a routine eye examination a couple of years ago, Andrew took it upon himself to take himself off the roads.

Andrew now cycles everywhere. He feels there are many positives to this. He gets to work in 20 minutes, whatever the weather. He feels healthier and fitter. In order to be able to help his wife with the school run, Andrew bought a tag-along for his bike.

As Andrew’s condition began to have a greater impact he did start feeling concerned about how he was coming across to others, and about the potential embarrassment for them. He now tries to alert people to his difficulties to avoid awkwardness. These days Andrew is more open about his difficulties. If required to read a document, he explains that it is easy to get around this by photographing it on his SmartPhone and enlarging the text. This is something Andrew also uses in shops to assist him in reading small print on labels. He says that, whilst it may look at bit odd to other people, it is a very useful tool. When Andrew first acquired his SmartPhone it seemed that it wouldn’t actually be useful for him, but then he discovered the zoom which allows him to magnify the icons and see everything. Siri is also a valuable tool. He describes another incident where he used his camera phone and magnification facility in order to locate his daughter in the park after she had rode off on her bike and he couldn’t see where she was.

Facial recognition is a big issue for Andrew. He has a tendency to walk past people he knows simply because he cannot recognise faces, and he does worry that some people might think he is being rude and ignoring them. He humorously describes even walking past his wife, but goes on to say that she does change her hairstyle a lot! Andrew describes trying to recognise people by their general profile as being rather like using aircraft recognition silhouettes.

Age related macular degeneration can occur overnight, which is a complete shock and absolutely life changing. Andrew feels that there are positives about having a condition that begins earlier in life as he has learnt to adapt and found ways to deal with it. He doesn’t know what it is like to have perfect vision, but his condition has not stopped him from having some tremendous experiences. There are things he can no longer do, but he is willing to give anything a go.

Currently there is no cure, but lots of research into macular degeneration is being done. Although Best disease isn’t as common, it is in the same area so Andrew hopes that any new treatments discovered for macular degeneration will also benefit those with Best disease. It is not yet known how or why people develop macular degeneration, but Andrew feels that having a healthy lifestyle could help to reduce risk.

Andrew says that in order for others to help him and make his life easier, it basically comes down to general awareness and consideration.

Bill’s Story

Bill is 72 years of age and was diagnosed with dry macular in one of his eyes about 14 years ago. At that time Bill’s vision was still very good; he was in the early stages of the disease and it had no effect on his life.

Macular degeneration affects the point at the back of the eye where light hits, and impacts on central vision. The receptors that turn light into vision become dulled. Peripheral vision can remain largely unaffected. The condition mostly affects people over the age of 55. There are two forms of the disease: dry and wet. Many people who develop the dry form go to have the wet form. The wet form tends to progress faster, and is caused by blood leaking into the back of the eye. Once a blood vessel bursts and blood is allowed to leak into places it shouldn’t be, it becomes caustic and produces scar tissue. The effect is seriously blurred vision in the central spot.

Two years ago, during a routine eye exam, Bill was told that his right eye had gone wet. In years gone by there was no treatment. Now there are injections that can be put into the eye every month and they help to drive away the blood that has leaked and can stop the scarring. This protects the eyesight from being blurred.

During a recent sight test Bill was told that his vision is very good. His Optician explained that had he been in the same situation 20 years ago he would now be using a white stick because they wouldn’t have had the injection treatment at that time.

Bill’s vision is currently extremely good, and may remain that way for many years. Part of the problem psychologically is not knowing when or if the condition will get worse.

In Guernsey there are around 1000 people affected by macular degeneration. Two years ago Bill set up a group called the Macular Society. They meet once a month, and it is an opportunity for people with the condition to share challenges and coping strategies, and support each other. They also invite motivational guest speakers, many of whom are visually compromised or blind.

Bill recalls the very first meeting which was attended by about 30 people. During the break everyone was silent. They were all feeling frightened and worried. Two years on breaks can sound more like a football match. The atmosphere has changed, and people are now gaining confidence as a result of being able to talk to others in a similar situation to themselves. Bill feels that learning coping strategies from others is invaluable, and helps people to realise that it is still possible for them to achieve things. Having visually impaired or blind speakers can be inspirational and highly motivational. They are able to share how they cope, and that encourages others.

The Macular Society in the UK have developed a range of gadgets to assist people with visual impairment. Two members of the Guernsey Macular Society attended a training course to learn how to use some of these devices, and they are now able to demonstrate their use to others locally. Bill is keen to visit care homes, the Guernsey Voluntary Service, and other places where elderly people gather in order to raise awareness of these useful tools. He is also keen for the public generally to be more aware of these devices and aids, and if younger people know they exist they can tell friends or relatives who might have a visual impairment.

Technology doesn’t come naturally to the elderly, and this can be a barrier to accessing and using devices. Bill feels that learning about such things from other people who have been down the same road helps enormously.

Everyday activities such as reading a newspaper might be things that people with macular degeneration initially feel they can’t do anymore. However, with the assistance of devices or magnifying aids, it can be possible for them to continue to enjoy reading newspapers, but in a different way to how they did before.

Restaurants can be particularly challenging due to dimmed lights and the style and colour of print on menus. Somneone with macular degeneration needs the best possible light in order to even have a chance of reading a menu. The spotlight and magnifying features on SmartPhones can help. Bill says it would be wonderful if restaurants and similar venues were more aware of the impact that dimmed lights and choice of print on menus can have on those who are visually compromised, not just specifically in relation to macular degeneration.

Appearances can be deceptive, and it wouldn’t be obvious to others that someone walking down the aisle in a supermarket using their peripheral vision was visually compromised. It might only be when they wanted to read a product label that their difficulties would be more evident. Bill says it would be lovely if, seeing someone struggling to see in this way, people offered to assist. He acknowledges though that not everyone wants to admit they have problems with the vision, and individuals may work hard to appear normal. Some may be a little bit defensive. Bill would ask people not to be offended and to understand that the person is hurting, and also not to be discouraged from offering support again in the future.

Bill says it is difficult for anyone to understand how any disease or condition impacts on someone else, and people simply cannot identify what it is that affects someone with an eye condition, particularly a progressive one. Campaigns such as ‘We All Matter Eh?’ help to bring it to the attention of the public so that people can begin to recognise when others might need help.

Bill feels that remaining positive is important, and that being able to gain support and encouragement from others in a similar situation brings many benefits.