A patient inspires doctors to learn more about a rare and potentially deadly cardiac condition

February is heart month Anne McAllister's story of heartache and healing is also helping researchers learn more about a rare and potentially deadly disease. Here's CTV's Joel Haslam.

On a bright, frigid, winter’s day, Anne McAllister is wrapped in scarlet as she takes a brisk stroll along her Ottawa street.

Her coat’s colour is fitting.  She’s like a beacon for the place that restored her health.

"We are incredibly lucky to have an institution like the Ottawa Heart Institute here in Ottawa," said McAllister.

February is Heart Month.

And McAllister’s heart is gratitude-filled for the lifesavers working at the University of Ottawa Heart Institute.

"They come from all over the world because it attracts the best minds and best researchers," said the 71-year-old.

It was more than a decade ago that those same minds and researchers would help Anne with a sudden change in her heart health.

"I could feel my heart pumping. I would get very red. I could feel myself getting overheated," she said.

Initially, McAllister was having frequent spells of arrhythmia-- a racing heart.

"I had a series of what they call tachycardia, very rapid heart rate."

And not long after, she began experiencing Bradycardia.

"Which is a very low heart rate, like in the 30’s," she said.

McAllister was admitted to the University of Ottawa Heart Institute where a pacemaker was implanted to correct her heart rate.

"And everything was fine, until two years later, when things changed again," she said.

It was 2009 and Anne was now back in hospital with heart failure.

Doctors realized the fit and active patient was dealing with more than a typical arrhythmia. Eventually, McAllister was diagnosed with Cardiac Sarcoidosis; a rare, and potentially, deadly condition that had gone undetected during her initial visits to hospital.

"That’s why I feel so bad about Anne’s case.  We missed it for two years and she sustained substantial damage," said Dr. David Birnie, a cardio physiologist at the University of Ottawa Heart Institute.

Sarcoid is an auto-inflammatory disease.  It can affect any organ in the body. Its cause is unknown.

Between 20,000 and 30,000 people are living with sarcoid disease in Canada. Only five per cent of those patients will experience significant heart-related issues.  It impacts people in the prime of their lives, ages 30 to 60.

There is no known cure, but early detection is vital.

"Left untreated, or If we don’t pick it up early, it can be fatal, because in some patients, the heart gets progressively more and more damaged," said Dr. Birnie.

With medications, doctors were able to prevent any further damage to McAllister’s heart. Her case inspired Dr. Birnie to start investigating a disease many in the medical community didn’t know a great deal about.  Cardiac Sarcoidosis would become a focal point of Dr. Birnie’s research.

"I was just very fascinated by this disease and the potential to help people," she said.

In 2014, Birnie and others published the first international guidelines for diagnosing the condition. A study is underway, conducting a registry with 1,500 patients from 15 hospitals.

And the Ottawa Heart Institute now operates a Cardiac Sarcoidosis Clinic, receiving 100 referrals per year.

Anne’s heart condition did mean an abrupt end to her career as a lawyer with the Federal Department of Justice at age 59.

"I came home from work on a Friday and went into the Heart Institute over the weekend and never went back to work," she said.

Today, Anne’s living a full life. Heart failure, though, has meant accepting changes.

She tires going up hills, has less stamina, and needs help with some outdoor chores, like gardening.

She works out regularly with a trainer, and has been fitted with a pacemaker-defibrillator.

"It’s my own little defibrillator that will go off, if I have a heart attack," she said.

McAllister is an avid traveller and is eager to see the world again.

"I’ll be excited when I can get on a plane again and go somewhere," she laughed.

For now, Anne gives back to the place that has given so much to her.

"In 2018, I was named 'Volunteer of the Year' at the Heart Institute,” she said with a smile.

"It was thrilling. I was very appreciative and humbled to receive that award."

You can donate to the University of Ottawa Heart Institute at Februraryisheartmonth.ca.

Your donations will be matched this month by the Institute’s community match champions.