February is Macular Degeneration/Low Vision Awareness Month. Being a vision scientist, specializing in low vision, you would think I’d have been aware of this. Nope. Shame. Most of the planet knows that October is Breast Cancer Awareness Month, but very few have any idea that this month is Macular Degeneration (AMD)/Low Vision Awareness Month. There are more cases of AMD than there are of breast cancer. In fact, the number of people living with AMD is similar to the number of people diagnosed with all types of invasive cancers. I know, I know, AMD is not fatal, but it is the leading cause of irreversible blindness in older adults. It affects the independence, mobility and quality of life of those that have it. That should make it worth noting.
AMD is a multifunctional disease, meaning it’s caused by a lot of things. Age is the biggest factor. Some ophthalmologists start looking for signs in those as young at 50. Genetics also play a role. If you’ve had a family history of AMD, that puts you at higher risk. In terms of ethnicity, Caucasians have the highest risk. Scientist believe this has something to do with a lack of melanin. Your lifestyle can have an impact on your risk of developing AMD too. Obviously, smoking is bad for you, but it affects your eyes too. Smokers are three times more likely to develop AMD. Since inflammation has been shown to contribute to AMD, keeping your blood pressure and cholesterol levels low can be helpful. Probably the simplest thing you can do to reduce your risk is to wear your sunglasses. UV light wreaks havoc on your skin, imagine what it can do to your eyes when it is directly absorbed by the delicate photoreceptor on your retina.
There are two forms of AMD; dry and wet. The dry form is the most common, affecting about 90% of people who develop the disease. The central retina starts to deteriorate causing blind spots to develop or vision to be come blurry. Dry AMD progresses slowly, but can turn into the wet form at any time.
Wet AMD occurs more suddenly and progresses more rapidly than the dry form. It is referred to as “wet” due to the abnormal growth of blood vessels under the retina. These vessels tend to be leaky, releasing blood and fluid into the retina. The bleed is often noticed by patients when something they know is straight (a lamp post or slats on a blind) appears distorted or wiggly.
To date, the only treatment for dry AMD is preventative. The Age-related Eye Disease Study (AREDS) recommends taking a daily mixture of vitamins and minerals called Vitalux® to prevent and/or slow down the progression of the disease. Other preventative measures included lifestyle changes such as quitting smoking, keeping weight healthy, maintaining a normal blood pressure and wearing UV-blocking sunglasses.
There are more treatments available for wet AMD, but they are by no means a cure. The most common treatment today is called anti-VEGF. It is a recombinant antibody that is injected directly into the eye (if a needle in your eye isn’t enough to get you to wear your sunglasses, I don’t know what is!) Anti-VEGF’s purpose is to prevent the growth of those abnormal blood vessels. This treatment usually clears whatever fluid is present out of the retina, preventing it from doing further damage. Lost vision is rarely improved however, and the problem is likely to recur.
AMD takes away your central vision. Central vision is functional vision. It allows you to see fine details, colour, contrast and depth. Loss of central vision allows affects how steady you can hold your gaze. When you are fixing your eyes on something, they aren’t completely still. They drift and have tremors that are small enough for you not to notice, but when you lose central vision these movements become larger in magnitude, making maintaining a steady gaze difficult.
One of the biggest complaints the people I work with have is not being able to read anymore. No, enough magnification is not going to fix the problem. In AMD, the retina deteriorates to the point of scaring. No amount of magnification is going to help see through that scar. Another big complaint is inability to recognize faces. One man told me he wished he could tell his grandsons apart. He said they all have brown hair and sound pretty much the same, the only way he can tell who is who is by their heights. If they are seated or aren’t next to each other, it’s impossible.
Other folks are upset about their driver’s license being taken away or not being able to play cards on Sundays anymore. The worst cases are those that have become depressed. Growing older is not easy and it has its own stigma attached. Losing your vision on top of that, something you have depended on your entire life to get around, to socialize, to be independent, makes it that much harder. Not everyone adapts well.
There are organizations that can help those who have low vision adapt. The Canadian National Institute for the Blind (CNIB) is one of those organizations. People with AMD don’t go completely blind, some peripheral vision remains and they can be taught how to best use that remaining vision. Places like the CNIB have devices and techniques that can help those affected adapt to their vision loss. Certified low vision therapists can even make house calls to adapt a client’s home to meet their needs. According to some local research, 33% of people diagnosed with AMD have no idea rehabilitation agencies exist and 13% know of their existence, but decide not to try it.
My Gran had AMD and she joined the CNIB. Gran could no longer read, so they would send her several audio books every month. She would listen to them while playing solitaire using a special deck for people with low vision. Gran was a pro at cryptic crosswords too. For a long time, she wasn’t able to do them. She was thrilled when the CNIB gave her a device that allowed her to do them again. They came to her apartment, taught her some tricks and set up the place so she was still able to cook, clean and wear clothes that matched. Gran lived with AMD for 15 years. Thanks in part to the CNIB, she stayed busy, happy and independent right up until the week she died.
I could go on forever about AMD and low vision but, I’m afraid I would lose you, so I’ll stop here. Take care of your eyes and educate yourself. Tell your relatives, tell your friends. AMD is caused by many factors. Some, like aging, genetics and ethnicity, are out of your control, but others, you can control. Stay healthy, get regular dilated eye exams and for Pete’s sake wear your sunglasses!
Somber Scribbler 