Advocating for improvements to enhance the lives of people with diabetes and diabetic retinopathy
Diabetic retinopathy develops over time for people with both types of diabetes and often goes unnoticed until vision loss occurs, sometimes quite suddenly. That was the case for 34-year-old Ryan Hooey of Windsor, Ontario.
“It doesn’t happen this way for everybody, but I lost my sight literally overnight. I drove home one Saturday night, went to bed and when I woke up Sunday morning, I couldn’t see.” Mr. Hooey was 27 at that time; he had been diagnosed with type 1 diabetes at age seven.
Mr. Hooey was plunged into a new reality, and with the support of CNIB specialists in independent living skills, he acquired numerous tools to help him adjust. “The specialists helped me to learn Braille and to embrace different technologies to better manage my daily tasks.” Another key source of support is his guide dog, Joe.
Mr. Hooey has seen how advances in treatment have made his life better and now puts energy into advocating for policy and technology enhancements that will benefit all Canadians with diabetes and those who have lost their sight.
One goal he is pursuing, alongside CNIB, where he now works, is to persuade insulin pump manufacturers to add accessibility features for people who are blind, similar to how many smartphones operate. “I can use only about 11 per cent of the functions, and if I don’t have someone sighted with me to assist, problems can develop,” he says.
“Once, I was staying in a hotel while travelling for work and my insulin pump warning sounded. I thought I bypassed the warning to bring me back to the main menu, but I accidentally changed the amount of insulin to be administered,” says Mr. Hooey. “I was lucky that it only changed a small amount, as it could’ve been extremely dangerous if it administered too much insulin.”
Mr. Hooey is also an advocate supporting Diabetes Canada in raising awareness about the serious prevalence growth and health complications associated with diabetes and the need for a national diabetes strategy to improve diabetes prevention, where possible, screening and treatment, as well as cover the costs of diabetes medication, devices and supplies for Canadians who don’t have private or employer insurance coverage. A national strategy would also boost funding for research, something that Mr. Hooey highly values.
“I think about my daughter, who is almost two. I know that she has a higher chance of developing diabetes due to hereditary factors.
“Thinking about her future, I’m excited about the possibility of research findings that could help prevent retinopathy and vision loss in people with diabetes, and even reduce the risk of diabetes altogether.”
Research into vision damage and blindness in people with diabetes
Diabetes Canada supports a range of research projects aimed at improving the quality of life of people living with diabetes, including investigations into precisely how diabetes leads to complications. Understanding the biological mechanisms that cause disease and how they may be altered can lead to potential new ways to treat and prevent these complications.
The most common long-term complication of diabetes is a form of eye damage called “diabetic retinopathy.” It is estimated that at least 500,000 Canadians have some degree of diabetic retinopathy, and it is the leading cause of blindness in Canadians under the age of 50.
What we do know is that the risk or worsening of eye damage can be reduced through blood glucose (sugar) control, regular eye exams and early treatment. However, eliminating the risk altogether and reversing sight loss remain important goals. Studies led by Dr. Przemyslaw (Mike) Sapieha of the University of Montreal, Canada Research Chair in Retinal Cell Biology, strive to address some of these larger challenges.
High blood sugar tends to cause reactions that result in a degeneration of the blood vessels in the retina, a sheet of nerve cells at the back of the eye, explains Dr. Sapieha. In the early stages, the vessels can leak into the retina, cause swelling and lead to blurred vision and blind spots.
“In later stages, the retina may also try to compensate for the loss of blood vessels by creating new ones in a disorganized fashion – which may bring about further and often more serious damage to vision,” he says. “We are exploring why blood vessels fail to regenerate in one area of the affected retina yet invade other areas that don’t contain vessels in healthy individuals.”
Dr. Sapieha has uncovered a unique mechanism in neurons in the parts of the retina where blood vessels have been lost. The neurons go into a dormant state where they’re not functioning, but are not dead.
“The idea is to understand what is being activated in those neurons to prevent them from dying and determine if we can use therapies to ‘wake them up.’ We think this opens up possible new treatments to kickstart these dormant neurons to function again,” says Dr. Sapieha.
“This could eventually allow us to preserve vision for people affected by diabetic eye disease.”
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