Archive for October, 2010

November is Pulmonary Hypertension Awareness Month

A Vegas Fundraiser for Pulmonary Hypertension
By Cheryl Santa Maria, Freelance Writer
October 25, 2010

Imagine not being able to walk for more than 10 steps without having to stop and rest.

Or being plagued with a fatigue so severe that it’s nearly impossible to get out of bed.

This is a reality for nearly 10,000 Canadians suffering from Pulmonary Hypertension (PH), a rare but sometimes fatal disease in which the lung’s arteries become scarred or closed off, leading to high blood pressure in the lungs. Patients suffering from Pulmonary Arterial Hypertension (PAH) – a condition where the heart can become enlarged – only live an average of two to three years if left untreated. PH in all its forms is a chronic condition that cannot be cured. Many patients will live with the disease for several years before being properly diagnosed.

Loretta was diagnosed with PH at the age of 25 but started showing symptoms of the disease – shortness of breath, fatigue, lightheadedness, and chest pains – five years prior.

“I have my good days and my bad days,” she says. “On a good day, I’m able to breathe normally … on a bad day I am exceptionally fatigued [and I experience] shortness of breath doing ordinary things that healthy people don’t think about, like grocery shopping and housework. Sometimes even taking a shower and getting dressed can be difficult.”

Although she maintains a full-time job and an active social life, PH is always in the back of Loretta’s mind. “One of my biggest challenges is accepting the fact that there may be certain things I’m no longer able to do … because of my limitation. I always try my best to stay positive and not dwell on what I used to do. I concentrate on what I can do.”

In 2008 Loretta – along with a family members, patients and caregivers – founded the first official Toronto chapter of PHA Canada, a national organization dedicated to spreading awareness and education. The support group has become an invaluable resource for the Toronto PH community by providing them with a space to learn more about the disease and share experiences.

On November 6 PHA Toronto will be holding their second annual fundraising event at Brebeuf College School in honour of PH Awareness Month. The 19+ Vegas-style party – titled “Let Me Breathe” – will feature casino tables, live music, a cash bar and an auction. Last year’s event was wildly successful, having attracted over 200 guests and raising over ten thousand dollars.

Due to the small number of PH sufferers in Canada, there is little information and public awareness about the disease. Loretta is thankful for the people she has met through her network and hopes that PHA Canada will benefit others as much as it has benefited her.

“I can’t change my diagnosis, but I can change what I choose to think about it,” she says. “Life is too short to dwell on the past. I choose to live in the present.”


For more information about “Let Me Breathe” visit

Discovery may spell cure for heart and lung disease


MONTREAL – A Canadian researcher may have discovered a breakthrough diagnosis – even a cure – for a devastating and deadly disease called pulmonary hypertension.

New research indicates a protein, dubbed PIM-1, is high in patients with the condition. The higher the PIM-1 levels, the more severe the patient’s pulmonary hypertension, which narrows and scars pulmonary arteries and can stress the heart.

“The PIM-1 level in healthy patients is almost zero,” Dr. Sebastien Bonnet, a researcher the Heart and Stroke Foundation, said in an interview Sunday. “Patients with severe pulmonary hypertension have PIM-1 levels through the roof.”

Bonnet explained that somehow the protein makes cells sick. The research is ongoing.

“If you’re able to knock down the expression of PIM-1, you’ll be killing only the cells that are sick without harming the healthy cells,” Bonnet said.

His research uncovered something even more exciting: by blocking the harmful protein, researchers were able to reverse the condition.

For the Quebec-based Bonnet, it’s a ray of hope for patients struggling with the disease.

“The treatments now are limited and inefficient and the only way to cure someone with pulmonary hypertension is with a heart and lung transplant,” he said.

The new discovery also might make it easier to diagnose the condition.

“This could be as simple as a blood test,” he said. “You can just check the (PIM-1) levels.”

Pre-clinical trials are now underway and Bonnet is optimistic human clinical trials on a drug cure will begin in a year.

According to the Pulmonary Hypertension Association of Canada, up to 5,000 Canadians have been diagnosed with the disease. Another 5,000 Canadians may be living with the illness and unaware they’re sick.