Canadian Doctors are stepping up this Rare Disease Day to address delayed diagnosis in rare disease patients

Canadian Doctors are stepping up this Rare Disease Day to address delayed diagnosis in rare disease patients

02.27.2019

Vancouver, BC (Feb 27, 2019)—Rare Disease Day is an international event that occurs annually on the last day of February to bring awareness of the estimated 300 million people affected by rare conditions worldwide, 3 million of whom are living right here in Canada. For those affected by lesser known and understood diseases, a timely diagnosis is often the difference between life and death.

When Judith Moatti—a young mother of one living in Montreal, QC—went in to hospital with what she thought to be a swollen gallbladder, she never would have guessed she was going into heart failure. 

“When I got to the emergency room, they thought I had stones but couldn’t find anything. They wanted to remove my gallbladder but mom refused to let them take me for surgery because she didn’t think it was reasonable to take out my gallbladder without knowing why it was swelled up”, she says. 

Hours of tests and nearly 15 doctors later, Judith was told she was in fact living with pulmonary hypertension (PH), a rare disease in which the arteries of the lungs get blocked, hindering the hearts’ ability to pump blood through the lungs and ultimately, the ability to breath.

“I don’t think this is an issue of awareness, most doctors have heard of pulmonary hypertension” tells Dr. Sanjay Mehta, a leading Canadian PH specialist and Chair of the PH Association of Canada, “this is an issue of ignorance around recognizing and diagnosing the condition”. 

75% of Canadian PH patients are in advanced stages of disease progression by the time they’re diagnosed, which greatly reduces the chances for effective treatment and life expectancy. This is why a

group of Canadian medical specialists from across the country have now decided to step up and address the critical issue of delayed diagnosis in patients through a series of videos aimed at educating medical providers.

“Physicians in almost any branch of medicine will run into pulmonary hypertension patients. They present to family doctors and emergency rooms all the time, because they often have many complications of their disease if they’re not diagnosed early enough” tells Dr. Mehta.

As with many rare diseases, PH can affect anyone regardless of age, gender, and social background. Dr. Angela Bates—a leading pediatric PH specialist who is taking part in this initiative—can speak to this.

“The thing that sets pulmonary hypertension in children apart from other lung diseases is that a lot of these kids can live with it without any symptoms and by the time they actually show up, they are very sick”, she says. “They can be as sick as being in the ICU, as sick as dying from this disease.”

Progress in research and the treatment of PH over the last decade has meant there is a lot more hope for anyone diagnosed early enough today.  “It’s important to recognize this as a treatable illness and that we have excellent therapies that are helping many patients with pulmonary hypertension,” tells Dr. Mehta

To find out more about early diagnosis of pulmonary hypertension, visit www.SometimesItsPH.ca or visit PHA Canada’s YouTube channel for the full list of videos.

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For Media Enquiries, please contact:

 

Michaël Robach
Communications & Engagement Coordinator
Pulmonary Hypertension Association of Canada
mrobach@phacanada.ca

T: 604-682-1036 (ext. 102)

 

About Pulmonary Hypertension

Pulmonary hypertension (PH) is a rare but very complex and serious lung disease, which is progressive and potentially fatal. PH is defined by high blood pressure in the lungs, which leads to enlargement and weakness of the right-side of the heart—a serious type of heart failure. PH can strike anyone regardless of age, sex, social, or ethnic background.

PH is difficult to diagnose because it shares many of its symptoms with other conditions and as a result, many people are misdiagnosed. Without treatment, the average life expectancy of a PH patient is less than three years.

Alarmingly, many patients spend 2 to 3 years of their life seeking an accurate diagnosis. It is estimated that approximately 5,000 Canadians have been diagnosed with pulmonary hypertension, but as many as 10,000 may be affected by the condition. Currently, there exists no cure for this disease, but thanks to available treatments, many PH patients are living longer and healthier lives.

For more information, please visit: www.phacanada.ca/en/about-ph/

 

About the Pulmonary Hypertension Association of Canada (PHA Canada) 

The Pulmonary Hypertension Association of Canada (PHA Canada) is a federally registered charity whose mission is to empower the Canadian pulmonary hypertension community through awareness, advocacy, education, research, and patient support. PHA Canada has been working to better the lives of Canadians affected by pulmonary hypertension since 2008. PHA Canada represents the Canadian pulmonary hypertension community, which consists of approximately 10,000 people.

For more information, please visit www.phacanada.ca

 

 

 

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