Global Community Joins Hearts to Advocate for People Living with a Commonly Misdiagnosed and Deadly Lung Disease

SILVER SPRING, MD (April 13, 2018) – Organizations around the world will join forces on May 5 to raise awareness for pulmonary hypertension (PH).  PH is a complex, life-threatening, too-often misdiagnosed progressive illness that affects 25 million adults and children worldwide. On World PH Day, dozens of sister organizations will raise awareness for the need for treatment access, resources and support for people living with this deadly disease.

Although some countries have access to treatments that can extend and improve life for people with PH, most people worldwide struggle to find treatments and care. Many who live in developed nations where PH treatments are available struggle to find an accurate diagnosis and health care professionals experienced in treating the disease.

Beginning May 5, the Pulmonary Hypertension Association joins 80 global PH organizations for a month-long campaign to let people who might have or are at risk for developing PH know about the disease and to advocate for access to early diagnosis, treatment and care. People around the world will join the global campaign in a joint demonstration of sharing social media messages linked by a common image of two hearts.

PH forces the heart to pump extra hard to push blood through to the lungs, which can lead to right heart failure and death. It is often confused with the systemic hypertension that is measured with an arm cuff, however PH has no cure, and without treatment, the average length of survival is under three years.

PH can exist alone or in association with many other conditions. In the developed world, PH is most commonly associated with left heart disease. In the underdeveloped world, schistosomiasis, caused by parasitic flatworms – also known as snail fever — is the greatest cause of PH. Other PH-associated diseases include connective tissue disorders, blood clots to the lungs, HIV, sickle cell anemia, COPD, as well as and many other conditions. It has also been associated with methamphetamine use.

Throughout May, PHA, the largest nonprofit serving the U.S. PH community – adults and children with PH, their families, caregivers and health care professionals – will share The Right Heart blog and video posts, social media messages and Facebook live events with global impact and reach.  PHA will also launch a digital public service announcement (PSA) featuring Elvis Medrano, a professional boxer diagnosed three years ago with PH who was born in the Dominican Republic and is now living in the Washington, D.C. area. In addition, PHA will also use the opportunity to promote its International PH Conference and Scientific Sessions, June 29 to July 1, 2018, in Orlando, Florida, at the Renaissance Orlando at SeaWorld, where Medrano will be one of the featured speakers.

To participate in the 2018 global PH campaign, PH organizations around the world invite you to sign up for their Thunderclap campaign.  Easily translatable social media badges, memes, social media messaging and other campaign tools will be available in English and Spanish toolkits on WorldPHDay.org.

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2018-04-20T16:08:20+00:00 April 20th, 2018|