Advertisement

‘Many families feel alone’: Pickering family among millions of Canadians impacted by vision loss

Click to play video: 'Pickering family among millions of Canadians impacted by vision loss' Pickering family among millions of Canadians impacted by vision loss
WATCH: More than a million Canadians live with vision loss, and according to a recent report, it's costing this country billions of dollars a year. As Aaron Streck reports, the effects both economically and in terms of quality of life, are being felt right here in the Durham Region – Jun 18, 2021

More than a million Canadians live with vision loss, and according to a recent report, it’s costing this country billions of dollars a year.

In the Durham Region, the effects of vision loss are being felt both in terms of economics and quality of life.

“Many families feel alone in this journey,” said Charmain Brown, parent and vision advocate. Her two children both live with vision loss.

The Brown family enjoys exploring their Pickering neighbourhood but that becomes a challenge later in the day.

“It’s called retinitis pigmentosa (RP) — it’s a genetic disorder that hinders my peripheral vision, central vision and night vision,” said Adam Brown who was diagnosed with RP as a child. He is now 17.

Read more: Blind Calgary hip-hop artist hopes to inspire others through his music

Story continues below advertisement

Adam says there’s a treatment that can help him, called Luxturna. His sister Jenna underwent the surgery on one eye 10 years ago, in the United States.

“Not only does it make what you see seem brighter but it also stops the progression of RP,” he said.

Charmain said they are hopeful Adam will be able to receive the treatment without having to travel.

“Now that it’s approved in Canada, they’re still negotiating in terms of pricing and all the logistics around it which is stalling the surgery from happening. In the meantime my son’s vision is gradually decreasing,” she said.

Click to play video: 'Health Matters: Experimental therapy helps Alberta man see' Health Matters: Experimental therapy helps Alberta man see
Health Matters: Experimental therapy helps Alberta man see – Feb 24, 2020

The Brown family has, so far, been able to manage the costs associated with the children’s needs but Charmain says she’s seen others struggle.

Story continues below advertisement

“We had to understand how they were seeing the world … and then we were able to put things in our home and make sure when we were out that they would be able to access things,” said Charmain.

The Canadian Council of the Blind, along with other partners in the country’s vision community, released a report outlining the costs of vision loss. It estimates 1.2 million people in the country live with the condition, which amounts to a cost of almost $33 billion to the Canadian economy.

“Early diagnosis is critical,” said Doug Earle, president and CEO of Fighting Blindness Canada.

Read more: What is age-related macular degeneration and why should older Canadians care?

Earle says regular eye exams are key to fighting the problem.

According to the report, 75 per cent of vision loss is either reversible, preventable or treatable if caught early.

“Innovation is playing a big role in enabling the health system to meet the fact that there are 50 per cent more people living with vision loss,” said Earle.

He says there is no vision health plan and the federal and provincial governments must do more.

The Public Health Agency of Canada told Global News the provinces and territories are responsible for delivering and managing health care, which includes vision care.

Story continues below advertisement

Global News reached out to the province of Ontario but did not receive a response before this story was published.

As for the Brown family, the wait continues for Adam’s surgery, but they’re hopeful the recent report will help get the ball rolling.

Click to play video: 'National care strategy to fight blindness and vision loss' National care strategy to fight blindness and vision loss
National care strategy to fight blindness and vision loss – Apr 25, 2019

Sponsored content