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diabetes and blindness: 'when you are in your twenties, you think you're invincible'

for ryan hooey, the first sign that he had diabetic retinopathy, the symptoms of which include blurry vision and floaters, was darkness.

by robin roberts

nov 22 2022
read time 6 minute read
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people with both type 1 and 2 diabetes are more likely to become blind
diabetes canada says more than a third of people living with untreated diabetic retinopathy will become legally blind. getty
after a fun saturday night out bowling with friends, ryan hooey, 27 at the time, went to bed feeling pretty good. when he woke up the next morning, he was completely blind.
“both my retinas detached overnight, which is kind of atypical,” says the windsor, ont., resident, who was subsequently diagnosed with diabetic retinopathy. “typically, there are warning signs.” but for hooey, the first sign was darkness.

what is diabetic retinopathy?

according to diabetes canada , diabetic retinopathy is a complication of diabetes, and occurs when persistent elevated blood sugar levels change or damage the retinal blood vessels, causing them to bleed or leak fluid. if left untreated, diabetic retinopathy can lead to diabetic macular edema, when the macula swells, causing vision problems. new blood vessels grow to compensate for the damaged ones, but they are weaker and more apt to rupture.

both conditions can lead to vision loss, the leading cause of blindness among working-age adults. in fact, according to fighting blindness , diabetic retinopathy affects approximately one million canadians, and roughly 6,000 are blind from the disease.

diabetes canada also says more than a third of people living with untreated diabetic retinopathy will become legally blind, and nearly one-third of those will develop severe sight loss within three years.

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diabetic retinopathy is a slowly progressing condition that typically affects both eyes, and the chances of developing it increase the longer you have diabetes. in its earliest stages, there may be no symptoms — or only mild vision disturbances — and it’s often diagnosed during routine eye exams.
as it progresses, symptoms include blurry vision, blind spots, vision that fluctuates throughout the day as blood sugar rises and falls, and floaters, small dark shapes that drift across your vision, although those can have many other causes.
people living with both type 1 and 2 diabetes are at risk for the condition, and 25 times more likely than the general population to become blind. other risk factors include high blood pressure, high cholesterol, being a smoker, having a black, hispanic or indigenous heritage, or a first-degree relative with diabetes.
diabetes does run in hooey’s family, and he himself was diagnosed with type 1 at age seven. he learned to give himself insulin injections and, despite his diabetes, grew up healthy and athletic, even winning a college baseball scholarship. he had regular eye exams because he wore glasses, so he was somewhat surprised when he was diagnosed with diabetic retinopathy.
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“when you’re in your twenties, you think you’re invincible, [retinopathy is] not going to happen to you,” says hooey, now 35. “but it creeps up on you.”

retinopathy is on the rise

dr. phil hooper, president of the canadian ophthalmological society , says that as diabetes is on the rise, so too is diabetic retinopathy. incidences of diabetes are also growing in the indigenous community, with a prevalence three times greater than that of the non-indigenous population. in fact, 29 to 40 per cent of indigenous people living with diabetes showed some form of diabetic retinopathy at the time they were examined, report diabetes canada. those who live in rural, northern or remote communities often face barriers to accessing health care, resulting in late — or no — diagnosis.

why is there so much diabetes in indigenous communities?

hooper says one reason for the high rates of diabetes among the indigenous population is a different metabolism.
“they tend to metabolize carbohydrates, which is the western diet, very differently than we do,” he says. “they also don’t have, as a whole, the income to have as varied a diet as they might like.”
hooey, whose mother is full indigenous, agrees that the diet of native peoples in rural areas traditionally is quite different from those living in urban centres. he also believes many in the indigenous community have an inherent mistrust and nervousness around western medicine which inhibits some from seeking screening and treatment.

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jennifer buccino, executive director for people affected by diabetes (pad) knowledge & connection at diabetes canada, says a recent diabetes conference in calgary was well attended by many in the indigenous community who shared their concerns and experiences, as well as that mistrust.
“the places they go for advice is not always their family doctor or diabetes specialist, if they even have one,” says buccino. “we know there’s a gap in terms of access.”

to that end, she says diabetes canada has partnered with the national indigenous diabetes association to determine what resources are needed and how to best meet them together.

can we prevent diabetes from causing blindness?

hooper says that, because symptoms don’t often appear until diabetic retinopathy has been present for some time, treatment is more difficult. which is why he emphasizes the importance of regular eye examinations for those with diabetes, noting that almost a third of those with type 2 show signs of diabetic retinopathy at the time of diagnosis.
it’s also crucial for people with diabetes to carefully monitor and manage their blood sugar levels, blood pressure and cholesterol, and to contact their doctor if their vision changes suddenly or becomes blurry or spotty.

and while dr. daniel laroche , a top eye specialist in new york city has recommended drinking green tea, reducing bread and rice intake, and sleeping on one side to save vision, hooper says he’s not an endocrinologist (a hormone specialist), and is unaware of any of those measures having an impact. he does say, however, that decreasing carbohydrate intake is key to controlling diabetes.

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a class of drugs called anti-vascular endothelial growth factor (anti-vegf) can also help by stopping the growth of new leaky blood vessels.
“[the drugs] won’t stop the underlying disease per se — that is diet and control of blood sugar — but they can certainly improve vision and stave off the development of permanent changes,” says hooper.
other treatments include injectable steroids, laser surgery and vitrectomy surgery, a procedure that involves removing vitreous gel and blood from the eye through small cuts.

current research in diabetes management

hooper says recent technological advancements for the management of diabetes, such as real-time blood sugar monitors that attach to your arm and connect to an app, are very helpful — if you can read them.
hooey, who is blind, can’t read the feedback from his insulin pump. he often has to facetime someone to read them for him. also, the alerts that come with some devices all sound the same.

“that’s why the cnib (canadian national institute for the blind) , diabetes canada and a few other organizations are lobbying the federal government for support putting an accessible insulin pump on the market, and to make accessibility a mandatory field for medical devices at large,” says hooey, who has initiated a new petition currently circulating to acquire 500 signatures by march 2 for the proposal to move forward in the house of commons.

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as well, buccino is encouraged by the federal government’s recently tabled  framework for diabetes , which if properly implemented and invested, will help eliminate some of the gaps and barriers for people living with diabetes.

“if we can get to a point where people have insulin pump coverage to manage diabetes from diagnosis to end of life, that would be a really big thing,” she says.
meanwhile, hooey, who works as a program lead for the cnib, says he is a living example that diabetic retinopathy is not an insurmountable barrier to a good life. he’s learned braille, has a guide dog, and relies on ever-evolving technology to see him through. “i tell people i’m blind, i’m not dead. i’m still youngish and i have a lot left to give and a lot of things i want to accomplish. i can still do them, i just might have to do them a bit differently.”
to add your name to ryan hooey’s petition to increase accessibility to medical devices, including insulin pumps, click here. 
 
robin roberts is a vancouver-based writer.
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