Nov. 10, 2017 – The Pulmonary Hypertension Association (PHA) will observe Nov. 21 as CTEPH Awareness Day by leading a nationwide campaign — as part of PHA’s The Right Heart™ Pulmonary Hypertension Awareness Month efforts — to educate the public about the form of pulmonary hypertension (PH) caused by chronic blood clots in the lungs.
PH, which affects adults and children of all ages and ethnic backgrounds, is a progressive condition characterized in general by high blood pressure of the lungs. Chronic thromboembolic pulmonary hypertension (CTEPH) is one form of PH that can occur due to chronic blood clots in the lungs, which physically stops or slows blood from flowing through the lungs. This forces the right side of the heart to pump much harder to move blood through the lungs, and can lead to right heart failure and death. Symptoms of all forms of PH are non-specific and include shortness of breath, fatigue and chest pain. Consequently, people with PH can go months, sometimes years, believing they have asthma or other less life-threatening illnesses.
The preferred treatment for CTEPH is a procedure called a pulmonary thromboendarterectomy (PTE) to physically remove the chronic clots, which can potentially reduce or even normalize blood pressure in the lungs. FDA-approved PH-targeted treatments are available for two forms of PH — pulmonary arterial hypertension (PAH) and CTEPH that is inoperable or present after the PTE.
For most individuals, there is no cure for PH. However, with early, accurate diagnosis and treatment with an expert PH team, patients can experience improved survival, physical exertion, and quality of life. People with otherwise unexplained shortness of breath, including those who have had a previous PE, could benefit from screening for PH. In CTEPH, this starts with a ventilation/perfusion (“V/Q”) scan and an echocardiogram at an expert center.
Throughout November, PHA’s The Right Heart campaign will feature a newly-launched blog, Facebook videos and live social media events to share stories that illustrate how adults, teens and children — who have all forms of PH, including CTEPH — are living their best lives. It will also highlight family members and loved ones affected by the disease who work with PHA to fight back through philanthropy, advocacy and volunteering. Through educational memes and other social media messages, the campaign will also educate the public about PH in association with other, more familiar diseases, which include heart disease, such as congestive heart disease; chronic lung disease, such as COPD; connective tissue diseases, including scleroderma and lupus; liver disease; methamphetamine use; HIV infection; and other conditions, including those linked more closely to CTEPH, such as acute pulmonary embolism (PE).
The CTEPH Awareness Day push includes Nov. 21 The Right Heart blog and social media posts that feature people affected by CTEPH with messages that focus on CTEPH testing and diagnosis, including the V/Q scan. PHA will also host a Facebook Live event featuring a PH expert at one of the nation’s PHA-Pulmonary Hypertension Care Center (PHCC) sites. In addition, PHA will promote www.BUSTCTEPH.org, where members of the public and health care community can find information on symptoms, diagnosis and resources for people living with the disease.
PHA’s CTEPH Awareness Day campaign is supported by an educational grant from Bayer.
A link to PHA’s CTEPH resources is included in an easy-to-use toolkit to encourage members of the PH community and the public to participate in The Right Heart campaign. The toolkit includes The Right Heart campaign badges, including CTEPH Awareness Day informational memes.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension 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 www.facebook.com/PulmonaryHypertensionAssociation.
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