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A kidney disease turned this education leader into an advocate for Ontarians waiting for a transplant

Karen Brown, president of the Elementary Teachers' Federation of Ontario, is seen in Toronto on October 15, 2021. (Darek Zdzienicki/CBC - image credit)
Karen Brown, president of the Elementary Teachers' Federation of Ontario, is seen in Toronto on October 15, 2021. (Darek Zdzienicki/CBC - image credit)

As president of an Ontario teachers' union, Karen Brown is no stranger to public addresses. Now she's started a new campaign to ask for something more personal: a kidney.

"I'm at the point where it is crucial," Brown, president of the Elementary Teachers' Federation of Ontario, told CBC News.

Brown, 55, says she was first diagnosed with polycystic kidney disease when she was 37. Since then, she says she's had to take a variety of medications and forgo some of her favourite hobbies, like riding her motorcycle.

But two years ago, things got worse.

Doctors told her she'd need a transplant, she says, and after family members proved incompatible, she decided to take the issue public and encourage more Ontarians to become living donors.

"Being someone that's in the public eye and to say you need assistance, it's a very humbling thing," she said.

"But it was necessary. I felt that I needed to do it. And I felt also others could benefit."

Hundreds in need in Ontario

Currently, over 1,200 people in Ontario need an organ transplant, nearly 800 of whom need a kidney, according to the Trillium Gift of Life Network.

"The need far outweighs what we have," said Candice Coghlan, education and outreach coordinator for the Centre for Living Organ Donation at the hospital's Ajmera Transplant Centre.

Surgeon Mario Alvarez Maestro (R) and his staff operate a renal transplantation on patient Juan Benito Druet at La Paz hospital in Madrid on February 28, 2017  . Doctors in Spain performed 4,818 transplants on 2016, including 2,994 kidney transplants, according to the health ministry's National Transplant Organisation (ONT). That means there were 43.4 organ donors per million inhabitants last year, a world record, up from 40.2 donors in 2015. By comparison in the United States there were just 28.2 donors per million inhabitants in 2015, in France there were 28.1 donors and in Germany there were 10.9 donors, according to the Council of Europe.

Over 1,200 people in Ontario are waiting for an organ transplant, according to the University Health Network. (Philippe Marcou/AFP/Getty)

Those in need of a transplant can wait an average of three to six years for a deceased donor, Coghlan says. Living donors, who can give an organ shortly after they're deemed eligible, help clear the backlog.

People who are eligible to donate but incompatible with their intended recipient can also sign up for the kidney paired donation program, run by Canadian Blood Services. Through that program, Coghlan says, an algorithm matches eligible donors to people in need across the country.

Living donors rigourously tested

Living donors aren't just tested for compatibility though, Coghlan says. They're tested to ensure they can donate with little health risk to themselves.

Ian Goodall-George, who donated his kidney 10 years ago, says after his six-week recovery period, he hasn't noticed any physical drawbacks.

"The only thing that I can't do after making the donation is to donate another kidney," he said. "That's the only limitation."

Ian Goodall-George walking in the hospital after donating his kidney over 10 years ago.
Ian Goodall-George walking in the hospital after donating his kidney over 10 years ago.

Ian Goodall-George is seen in hospital after donating his kidney over 10 years ago. (Submitted by Ian Goodall-George)

Though Goodall-George says he still doesn't know the identity of the person who received his kidney, he says it was one of the most meaningful experiences of his life.

"I was rolled into the operating room being the person that I was, and I think I was rolled out as a different person," he said.

"It gave me just a new outlook on life and a new perspective on things: how fragile things are and how important it is that we always look for ways to give back to people even if we don't know the person."

Goodall-George encourages anyone interested in becoming a living donor, but concerned about their own health, to reach out to people who have donated to see how positive the experience can be.

'It's really important'

As for Brown, she's preparing this month to start dialysis treatment while she waits to find an eligible donor. She says even if her campaign doesn't directly match her with a donor, she hopes it will increase the number of living donors in Ontario and get more organs to the hundreds of people who need them right now.

"I'm hoping to raise awareness, not just for," Brown said. "If we can encourage people to think about donating, it's really important."

"You don't have to be the perfect match for me... But you could help others."

Anyone in Ontario wishing to become a living donor can apply through the University Health Network's website.