Know the PHacts | Life In Purple

Pulmonary hypertension (PH) is a rare but very complex and serious lung disease that is progressive and potentially fatal. PH is defined by high blood pressure in the lungs resulting from inflammation or scarring in the pulmonary arteries. If left untreated, PH can lead to enlargement and weakness of the right-side of the heart, a serious type of heart failure.

PH shares a number of its symptoms with other conditions, resulting in many people being misdiagnosed. Without treatment, the average expectancy of someone with PH is less than three years. Alarmingly, many patients spend more than two years seeking an accurate diagnosis. While there is currently no cure for PH, thanks to available treatments, many patients are living longer, healthier lives.

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. PH is often an invisible health problem: people who have PH may not look sick.

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Understanding Life with PH

PHA Canada offers free resources to help you share knowledge with your network. You can download these for free, or fill out the order form (bottom of the page) to have them mailed to you free of cost.

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Burden of Illness

Between September & October of 2013, PHA Canada launched a nationwide survey of persons affected by pulmonary hypertension. Our goal was to determine the burden of illness of PH for both patients and caregivers. 

The findings reveal that Canadians living with PH are struggling to live with the many burdens the disease places on their lives. Respondents list social isolation, lack of disease awareness, and both physical and financial burdens as the top challenges that need to be addressed. Please review the survey findings in the booklet at this link. This booklet is also available in a printed format, and makes a fantastic resource for advocacy and awareness activities. Please write to info@phacanada.ca to request printed booklets.

Living with PH takes time. Due to the need to pace themselves and conserve energy, folks with PH may need more time for everyday tasks or may have to spread their activities out over longer periods of time. Caregivers take on additional responsibilities taking care of the family, leaving less time for everything else. Meanwhile, recurring medical appointments and clinic visits eat up considerable amounts of time and energy for both patients and caregivers.

People with PH are easily fatigued and can be limited in their ability to do chores around the house (even simple chores like making the bed can be challenging). For this reason, caregivers often take on the brunt of domestic chores, which can cause stress and fatigue. Even walking up a flight of stairs or even a short distance can be difficult for people who have PH. You can find out more about symptoms by visiting our Early Diagnosis website: www.SometimesItsPH.ca

After receiving a PH diagnosis, patients and caregivers have to learn many new things: information about the disease, navigating the health care system, taking their medications properly, and adapting their lifestyles and routines. It’s a lot to take in and these changes are not easy to integrate to everyday life. You can find out more about the impact that PH has on Canadians by checking out our Burden of Illness Survey at this link.

 
 
 
 
 
 
 
 
 
 
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