PHA Promotes Awareness of Rare Form of Pulmonary Hypertension

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As part of Pulmonary Hypertension Awareness Month, the Pulmonary Hypertension Association (PHA) has set aside Nov. 11 to help raise awareness and improve diagnosis of a rare form of pulmonary hypertension (PH). Unlike some forms of PH, chronic thromboembolic pulmonary hypertension (CTEPH) has treatment options that include a potentially curative surgery.

CTEPH is caused by blood clots in the lungs that harden over time and impede blood flow. Up to 5% of patients who develop a pulmonary embolism (or blood clot in their lungs) may develop CTEPH. Some patients with CTEPH have other changes in the small blood vessels in the lungs that make them narrower and stiffer. The clots stop or slow blood from flowing through the lungs and cause the right side of the heart to pump much harder, which can lead to right-heart failure and death.

Symptoms, including shortness of breath, fatigue and chest pain, are similar to other forms of pulmonary hypertension and more common respiratory ailments such as asthma. It is critical for anyone who has had a pulmonary embolism to know about symptoms of CTEPH and discuss with their physicians.

To accurately diagnose CTEPH, doctors must perform several tests. Those tests include a ventilation-perfusion (V/Q) scan that shows how blood circulates through the lungs to locate any areas of reduced blood flow and a right heart catheterization to measure blood pressure in the heart and lungs. CTEPH can be deadly but advances in treatment offer several options. One is a surgery that removes the chronic blood clots from the lungs.

“If left untreated, CTEPH is a deadly condition. Fortunately, it is perhaps the most treatable form of pulmonary hypertension, where even a cure is oftentimes possible,” said Gustavo Heresi, M.D., pulmonologist at Cleveland Clinic and director of the pulmonary hypertension program.

Dr. Heresi will participate in one of two Nov. 11 “Ask the Expert” Facebook Live events about CTEPH symptoms, diagnosis and treatments. The Spanish-language version, featuring Dr. Heresi and CTEPH patient Yanny Lopez, will take place at 10 a.m. EST.

At noon EST, an English version of the Q&A features Peter Hountras, M.D., of University of Colorado Hospital, and CTEPH patient Missy Storm. Watch at http://www.Facebook.com/PulmonaryHypertensionAssociation. Both events will be recorded and available afterward on the PHA website.

To learn more about CTEPH, visit PHAssociation.org/CTEPHDay. The day’s activities can also be followed on social media using #CTEPHDay.

About the Pulmonary Hypertension Association

Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s oldest and largest nonprofit patient association dedicated to the pulmonary hypertension (PH) community. Pulmonary hypertension is a rare, chronic and life-threatening disease of the lungs for which no cure currently exists. PHA’s mission is to extend and improve the lives of those affected by PH. To achieve this mission, PHA engages people with PH and their families, caregivers, health care providers, and researchers worldwide who work together to advocate for the PH community, provide support to patients, caregivers and families, offer up-to-date education and information on PH, improve quality patient care, and fund and promote research. For more information, visit http://www.PHAssociation.org and connect with PHA on Twitter, Instagram, Facebook and LinkedIn.

Contact: PHA Communications

communications@phassociation.org

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