Ottawa school teacher living with rare Pulmonary Arterial Hypertension for more than a decade

Jo-Anne Mainwood has been living with Pulmonary Arterial Hypertension (PAH) for 14 years – a rare and challenging disease affecting approximately five in one million people annually.

"I'd walk up two flights of stairs and suddenly I was completely breathless. I'm having to sit down. I'm having to catch my breath," shared Mainwood.

PAH is a deadly and progressive disease with no cure.

"Pulmonary hypertension involves high pressures in the lung blood vessels. As a consequence, people become short of breath, eventually develop heart failure and can eventually die of this disease," said Dr. George Chandy, Mainwood's respirologist at the Ottawa Heart Institute.

Mainwood, with the support of Dr. Chandy and the Ottawa-Carleton District School Board, has been managing to continue her passion of teaching despite the challenges posed by PAH.

"She's more or less working full time, but in the context of accommodations which allow her to do her job at her own pace," said Dr. Chandy.

The school has provided Mainwood with necessary accommodations, including easy access to supplies and washrooms, and moving all her classes to the ground floor.

"I mean, that's all I can do. I can teach and then I'm pretty much done. I can't go grocery shopping. I can't go out on a school night. I'm basically in bed by seven," Mainwood said.

PAH is often considered an invisible disease, and many of Mainwood's students were unaware of her condition. Planning to retire at the end of the school year, she aims to raise awareness about PAH to help others facing similar challenges.

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"Folks with pulmonary hypertension can be very isolated," said Jamie Myrah, executive director of the Pulmonary Hypertension Association Canada, who emphasized the isolation that individuals with PAH may experience.

"They can suffer from a real lack of understanding by even their friends and their family because folks can really misunderstand the seriousness of their condition because they just don't look sick."

Mainwood says the importance of early diagnosis is the key to living a longer life with PAH. Despite advancements in medicine extending the life expectancy of patients like Mainwood, the future remains uncertain, but she stays positive.

"When life isn't quite going the way you want it to go, well, you know, just adjust it and find the positives in what you can do."