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Kingston woman with rare disease scared she is losing her family doctor

Click to play video: 'Kingston woman with a rare disease is losing her family'
Kingston woman with a rare disease is losing her family
A Kingston woman, Ashley Stevenson, is about to lose her family doctor in October, which she says could come with dire consequences because of her rare disease. – Jul 25, 2022

Mother of two Ashley Stevenson has lived in Kingston all of her life. She says she has a rare disorder called Charcot-Marie-Tooth disease, which gradually weakens the muscles and nerves, making it hard to walk or stand for too long.

In the fall, Stevenson will lose her family doctor.

“My disease does progress rapidly if not looked after. In the end, I will pass from it but with trying to fight it as it is and then without a doctor … it just makes life shorter,” Stevenson told Global News.

A couple of weeks ago Stevenson found out that her physician, Dr. Deanna Russell with the Kingston Health Team, will be leaving the province in October.

Global News reached out to Russell for a comment, but she declined to be interviewed.

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“My disease taking me sooner … from our two girls, that’s our fear,” Stevenson says.

She became a patient of Russell 13 years ago when her previous family physician retired. Like thousands of other Kingston residents, she’s now being put on a wait-list for another family physician.

“I put my whole family on the wait-list and I’ve been calling around and doctors are full,” Stevenson says.

Andrew Chisolm has lived in Kingston for the last 10 years after moving from Nova Scotia to attend St. Lawrence College.

He says he’s been on the family doctor wait-list for the last seven years.

“It makes me feel like I’m a burden on the system, which, I mean, I suppose I am, like I am just another number that has to be processed.”

Chisolm says he was only able to receive a diagnosis and treatment for his asthma through a study offered by Queen’s University.

“It shouldn’t take medical studies to get basic medical attention or care,” he told Global News.

Newly elected Liberal MPP Ted Hsu campaigned on the need to train and recruit more family doctors, as they retire or move on, especially as nearly 29,000 Kingstonians are currently without one.

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“I’m worried because you talk to people and they needed some operation or some test done yesterday and it’s hard to say what you can do overnight,” Hsu says.

He adds that improving the situation means repealing Bill 124, which limits wage increases for nurses and health-care workers; improving mental health supports; and fast-tracking accreditation for internationally trained health professionals.

“All of these little things that could be done quickly because we really are in a crisis situation,” says Hsu.

With a disease rapidly causing her health to deteriorate, Stevenson says all she can do right now is hope that she won’t be an orphaned patient for very long once her doctor leaves in the fall.

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