what it feels like: age-related macular degeneration is genetic but not inevitable
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sylvia irwin, centre, with her sisters shirley, left, and ruth.
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sylvia irwin has a large bookshelf filled with favourite and future reads. thankfully, the 88-year-old etobicoke woman has excellent eyesight—something she has never taken for granted.
“i always thought from an early age that i’ll probably be blind by the time i’m 80 because of my dad’s family’s history. and so i think, my gosh, advances in medicine are just wonderful because my vision is very good,” she says. “i still read a lot and i have two or three books on the go right now. i play bridge once or twice a week with a group in town and i do crossword puzzles.”
her father was the oldest of 11 children. he lost much of his vision by his early 70s, but he could still see “shadows” and take care of himself. “he did go for his checkups, but they didn’t have the procedures they have now,” irwin explains of his gradual loss of eyesight. she also has an uncle who is her age who recently lost his sight even though he knew the family history. “my uncle walter went blind and i couldn’t believe it in this day and age. he didn’t bother going for his eye checkups.”
genetics play a significant role in age-related macular degeneration (amd), which is common in irwin’s family. it’s a degenerative eye disease that affects central vision and a leading cause of vision loss in canadians aged 55 and older, with over 2.7 million people impacted across the country. amd happens when a critical layer of cells beneath the macula breaks down and slowly disappears. the macula, a small area located in the centre of your retina, is essential for clear, precise vision necessary for driving and recognizing people’s faces, for example. scientists have found that age, diet and smoking influence the risk of developing amd, and it’s more common among certain ethnicities, such as people of asian or european descent.
early detection of amd and proactive eye care
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as the canadian ophthalmological society emphasizes, while age remains the biggest risk factor for amd, the disease is not inevitable. early diagnosis can catch the disease in its initial stages so there’s time for interventions that preserve vision and prevent significant eye problems. february has been designated as age-related macular degeneration awareness month, thanks in part to legislation passed for a national eye care strategy act to improve prevention of eye diseases.
irwin has been proactive about her eye health all along the way since her early 20s, trying to eat well and exercise regularly, understanding the importance of lifestyle. she was an office clerical worker, called “girl fridays” back then, she says, before staying home to raise her two children while her husband worked shifts as a firefighter.
she’s had some knee pain this past year and had to give up cycling, but she’s still very active. “we have a gym here in the condo and i swim almost every night.” just as important, she’s gone to eye specialists for years. “the first thing i would tell my optometrist is we have this in my family and i’m sure i’m going to get it, so they always tested for [agm]. they found the first signs when i was in my late 40s.”
the early warning signs of amd are not obvious and many people only notice something has happened when their vision becomes blurry. early detection for irwin by an eye specialist meant it could be monitored and treated when needed.
“i didn’t notice anything bad. and then i’ve had my cataracts done. so that was the first thing i noticed i was, ‘oh my gosh, i’ve got macular degeneration.’ but then my optometrist said ‘no, you don’t. you’ve got cataracts.’” cataracts are cloudy areas in the lens of the eye. irwin had her cataracts in both eyes removed when she was 75, thrilled with the results of seeing bright colours and reading road signs much more easily.
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in the last two years, however, she’s noticed issues with her amd and was referred to an ophthalmologist, an eye doctor who can treat amd with drug therapy.
“my left eye is worse than my right eye. i can see out of my left eye but some of the lines are wiggly. with both eyes open, i don’t notice it,” she says, adding regular treatment has improved her vision.
“one of the big things with macular degeneration is that it’s much better to avoid vision loss than it is to salvage it once it’s been lost,” says dr. nupura bakshi, a toronto retina specialist, associate professor at the university of toronto and board member of the canadian ophthalmological society. irwin is one of her patients who demonstrates that a commitment to eye health can protect vision.
“i see patients with amd every single day who both have both forms of macular degeneration, the dry form and the wet form, and i think basically what happens is certainly aging is the number one risk factor and we can’t do anything about that one but other risk factors are modifiable including things like go overall good health, not smoking, protecting your eyes from the sun and having a healthy diet that’s high in antioxidants with green leafy vegetables.”
she explains the two main forms of amd, with dry resulting from the metabolic waste products of the cells collecting over time where the retina is much like an aging sidewalk that eventually breaks down and crumbles.
“the back of the eye becomes more affected and weaker, so there are cracks in the sidewalk that develop and the blood vessels underneath the retina come up through these cracks in the sidewalk just the way we see weeds growing in older sidewalks.”
treatment options and living with amd
there are no drug treatments for dry amd in canada, but research led by the national eye institute has shown that taking a vitamin supplement called areds can slow disease progression, bakshi says. dry amd can also progress into wet amd, which is less common and usually more severe than dry amd. when the blood vessels underneath the retina start growing, they degenerate and leak fluid and blood, she says. “getting the fluid in the blood in the retina affects the vision and that’s called wet macular degeneration.”
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for wet amd, drugs called vegf or anti-vascular endothelial growth factor are painlessly injected into the eye to help stop the proliferation of abnormal vessels.
“oftentimes because people are using both eyes, they don’t realize that they’ve lost vision in one eye because they’re looking at things with two,” she says of the importance of having your eyes checked at least every two years or yearly if you have a family history of eye disease. a definitive diagnosis of amd comes from my eye exam as well as a retina scan.
“vision is such a huge aspect of quality of life,” bakshi says of what drew her to her medical specialty.
“i think what we don’t realize is the burden that vision loss creates and not just for the patient, but for the family member and the caregivers. vision is so important for older adults, for their safety, reducing risk of falls, for their mobility. and it helps with their cognition to be able to see well.” numerous studies back this up, including a recent analysis in frontiers of public health that demonstrated the impact of visual impairments on cognitive functions in older adults.
irwin has dry amd in her left eye and wet amd in her right eye, where bakshi has given her vegf once a month for three months, moving to every since weeks for two months and then every two months. her response to the medication has been strong. now she’s getting the injection every 10 weeks.
“it’s really good and i see very well even without my glasses. and i still drive, though not as much highway driving, except for visiting my son.” her younger sister has wet amd in both eyes and has benefitted from drug therapy in a clinical trial. “she has improved just wonderfully. so that’s good news,” irwin says, offering a message for others to be proactive about their eyes with regard to amd.
“do everything you can to prevent it, like eat healthy and take the vitamins that they recommend, especially if it’s in your family. go for your treatment and make sure you follow up and tell your doctor exactly what’s going on. that would be my advice.”
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to learn more about amd, its risk factors, diagnosis and treatment visit the canadian ophthalmological society and its amd resource website seethepossibilities.ca.
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