Early diagnosis is vital for proper treatment of life-threatening pulmonary disease

Pulmonary Hypertension Association establishes November 14 as CTEPH Awareness Day

Silver Spring, MD (November 14, 2018) – In order to help raise awareness and improve diagnosis of a rare form of pulmonary hypertension (PH), the Pulmonary Hypertension Association has established November 14 as Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Awareness Day. Symptoms—including shortness of breath, fatigue and chest pain—are not specific to PH. Consequently, people with all types of PH, including CTEPH, can go months and years with this progressive lung disease believing they have other more common illnesses, such as asthma.

CTEPH is a form of PH, or high blood pressure in the lungs, in which the pulmonary arteries can be physically blocked by chronic blood clots. Some patients with CTEPH also have other changes in their pulmonary arteries that can make them more narrow and stiff. CTEPH stops or slows blood from flowing through the arteries and causes the right side of the heart to pump much harder, which can lead to right-heart failure and death. To accurately diagnose PH, doctors must use a right heart catheterization. All PH patients also should be tested for CTEPH, which includes a ventilation/perfusion (V/Q) scan. Because earlier diagnosis often leads to better outcomes, PHA sets aside a day each year to recognize CTEPH during Pulmonary Hypertension Awareness Month.

“The Pulmonary Hypertension Association regularly hears stories from people with pulmonary hypertension who were misdiagnosed – sometimes for years – and therefore missed out on timely, effective care,” said Brad A. Wong, president and CEO of PHA. “Groundbreaking research continuously takes place with the result of new medications and treatments to help persons with pulmonary hypertension realize their best lives. However, the vital challenge remains to increase awareness of CTEPH and all forms of PH to ensure access to proper treatment.”

Angela Michelle, an adult who lives with CTEPH in San Antonio, exemplifies the dire need for increased awareness of PH. Her story began in 2013 with an episode of pleurisy, followed by multiple misdiagnoses and years of shortness of breath so severe that her heart raced just walking across a room.

“An old friend from high school who became a heart surgeon saw my Facebook posts discussing my health challenges. He told me he thought, from the symptoms and history I had shared, that I may have CTEPH,” said Michelle. “It was the first time I had ever heard of pulmonary hypertension or CTEPH, and my doctors were skeptical because they didn’t know much about the disease or because it was rare. With my friend’s assistance, persistence and getting in with the right doctors, I was finally diagnosed with CTEPH in January 2018. I had surgery this summer and I can now breathe again!”

The Pulmonary Hypertension Association (PHA) initiated the month-long Pulmonary Hypertension Awareness Month campaign to draw attention to this debilitating disease, thought to affect 25 million adults and children worldwide. PHA also created a web page specifically for CTEPH Awareness Day to raise awareness of the symptoms and risks for those who have had a pulmonary embolism in order to help reduce harmful delays in diagnosis and treatment. For more information about CTEPH and how you can spread awareness, go to https://phassociation.org/cteph.

PHA’s CTEPH Awareness Day campaign is sponsored by Bayer.

About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension (PH) organization. PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families, health care professionals and researchers. For more information and to learn how you can support PH patients, visit www.PHAssociation.org and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at facebook.com/PulmonaryHypertensionAssociation.

###