Seven in 10 Canadians Unaware of Potentially Fatal Lung Disease

~ Lack of knowledge about pulmonary hypertension continues to leave many at risk ~

TORONTO, Nov. 9 /CNW/ - While many Canadians know about diseases like asthma, diabetes and cardiovascular disease, few know about a rare, but potentially fatal lung disease - pulmonary hypertension (PH). According to a recent national survey, seven-in-ten Canadians are unaware that PH is a rare incurable lung disease, which results in high blood pressure in the lungs.

Affecting up to 10,000 Canadians,1 PH has a very low profile, even among medical professionals, and as a result, is often misdiagnosed or confused with a host of other illnesses. Early symptoms are subtle and include unexplained shortness of breath, fatigue, swelling of the feet and ankles, and fainting.

"Early detection and prompt treatment can significantly improve patients' symptoms, quality of life and long-term outcomes," mentions Dr. Sanjay Mehta, Professor of Medicine and Director of the Southwest Ontario PH Clinic in London, Ontario, and Medical Director, PHA-Canada. "November is Pulmonary Hypertension Awareness Month and our goal is to increase awareness and education for this invisible, incurable but treatable disease, so that we can offer patients the best outcomes possible as we continue to work towards a cure."

According to the survey, only one-in-five Canadians correctly associated swollen ankles, legs or abdomen as symptoms of pulmonary hypertension. Furthermore, one-in-three incorrectly believe pulmonary hypertension to be high blood pressure that can be treated by taking heart medication. Patients with certain types of pulmonary arterial hypertension (PAH) - the most severe form of PH - only live on average for two to three years if left untreated.2

"Over a period of four years, I went to my doctor and specialists countless times, but no one could figure out what was wrong," mentions Carol Doyle, who was diagnosed with pulmonary hypertension two years ago. "When I was finally diagnosed, my PH had significantly progressed. Had I received a prompt diagnosis, I could have been on the treatments I needed right away and managed my disease better."


Pulmonary Hypertension is considered by doctors to be a rare and elusive disease. The rarity of the disease and its common symptoms often lead to a delayed diagnosis. As symptoms are not unique to PH, even if the doctor suspects this disease, PH is often diagnosed after a long process of elimination. A confirmed diagnosis of PH requires a series of invasive tests to conclusively confirm the origin and cause of the elevated blood pressure in the lungs. Thus, both health care professionals and patients usually remain in the dark until the symptoms get worse. In fact, the average time from the onset of symptoms to an accurate diagnosis may be up to two to three years.3, 4


Although there is no cure for PH, there are several treatment options available, and Canadians living with the disease can live longer and healthier lives. Since 1997, seven treatments have been approved in Canada and thanks to these advancements, many patients are living longer and healthier lives.5

One such advancement is the Ontario Ministry of Health and Long-Term Care's recent decision to revise existing Exceptional Access Program (EAP) criteria to include funding of combination therapy for people living with pulmonary arterial hypertension.

"This decision is an important step for PH patients in this province. PHA Canada looks forward to continuing to work with governments across Canada to ensure that all PH patients have access to the best quality of care," says Darren Bell, President, PHA Canada.

Innovative new therapies that are under investigation in clinical trials may soon be available to patients. These include a new generation of oral and inhaled drugs that are easier to take and more convenient for patients.

If all else fails, transplantation of the lungs, or both the heart and lungs may be considered.


Living with a rare disease, like pulmonary hypertension, can be very lonely. In a country like Canada where people are spread out and sometimes live in very remote areas, patients often feel isolated. Community Connect is an online resource available at, reminding Canadians they are not alone; there is a strong community available to connect with virtually. It provides a single access point to resources and information available in Canada, enabling the PH community to connect and collaborate.


This online survey of 1504 adult Canadians was conducted by Leger Marketing between October 18th and October 24th, 2010. This method simulates a probability sample which would yield a maximum margin of error of +/-2.5%, 19 times out of 20.


PHA Canada is a charitable organization that was established by patients, caregivers, parents and family members (collectively referred to as "Canadians living with PH" - the loved ones of those affected by PH also live with the disease) on the principles of ending isolation, providing education and creating a united Canadian PH community. We strive to work towards these goals every day by rallying the PH community from coast to coast, in every town, to come together and make sure that PH stops being the disease of which 'no one has ever heard.'

The mission of PHA Canada is to work within a united pulmonary hypertension community and to provide leadership in awareness, advocacy, education and patient support on behalf of all Canadians living with PH.


1 Pulmonary Hypertension Association of Canada, Toronto Chapter. Accessed October 28, 2009.


3 Badesch, D.B. et al. Pulmonary Arterial Hypertension: Baseline Characteristics from the REVEAL Registry. CHEST 2010;137;376-387.

4 Humbert, M. et al. Pulmonary Arterial Hypertension in France. Am J Respir Crit Care Med 2006. Vol 173;1023-1030.

5 Pulmonary Hypertension Association of Canada, Toronto Chapter. Accessed October 28, 2009.

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