Silver Spring, Md. (Nov. 11, 2016) – The Pulmonary Hypertension Association (PHA) is dedicating Nov. 15 to raising awareness about a rare form of pulmonary hypertension (PH) linked to blood clots. While other forms of PH — or high blood pressure of the lungs — are incurable, people living with chronic thromboembolic pulmonary hypertension (CTEPH – pronounced “See Teff”) may be candidates for a surgical procedure that can potentially reduce or normalize blood pressure in the lungs.
CTEPH Awareness Day falls annually on the third Tuesday of November, which is Pulmonary Hypertension Awareness Month. This year’s CTEPH Awareness Day is on Nov. 15.
Promoting awareness for PH is a matter of life or death. In PH, arteries in the lungs become narrow, damaged, or stiff, putting pressure on the right side of the heart and causing it to enlarge as it works harder to push blood through the heart and the lungs. Common symptoms of PH include shortness of breath, fatigue, dizziness and chest pain. As such, the disease is often misdiagnosed as other more common illnesses, such as asthma. This leads to delays in proper diagnosis and treatment, costing patients valuable time which, in turn, impacts patient outcomes. With early diagnosis, proper treatment can extend and improve PH patients’ quality of life.
With early diagnosis, a number of FDA-approved treatments can extend and improve the quality of life for people diagnosed with other forms of PH as well. PH can exist alone or in association with other conditions such as scleroderma, lupus and other connective tissue diseases; congenital heart disease; chronic liver disease; HIV; congestive heart failure; COPD; and other illnesses.
CTEPH is believed to occur in up to 3.8 percent of patients who suffer from an acute pulmonary embolism (PE), a blood clot in the lungs. While there is no cure for other forms of pulmonary hypertension (PH), CTEPH patients may be eligible for a pulmonary thromboendarterectomy, or PTE, a surgical procedure to remove the chronic clots that cause CTEPH. Patients who are not candidates for PTE, or those with PH that remains after surgery, may be candidates for oral medication approved by the FDA for CTEPH.
As part of its Nov. 15 CTEPH Awareness Day events, PHA is working hard to educate PE survivors on their risks and to let them know that any person treated for a pulmonary embolism for six months or more who continues to experience shortness of breath should be screened for CTEPH. In addition, the organization will educate PH patients and others about two tests central to the CTEPH diagnosis – a right heart catheterization and ventilation/perfusion (V/Q) scan.
PHA’s CTEPH Awareness Day recognition will include patient support group celebrations, a Twitter chat (#CTEPHchat) and a number of events at PH centers across the country. PHA will also host a social media video competition on, “What I wish Everyone Knew About Blood Clots.” To learn more about CTEPH and how to get involved with CTEPH Awareness Day, please visit www.BUSTCTEPH.org.
Funding from Bayer Healthcare supports PHA’s CTEPH Awareness efforts.
Throughout the month of November, as part of its awareness month activities, the Pulmonary Hypertension Association (PHA) is inviting people from all walks of life to publicly acknowledge acts of kindness by taking the A Heart Cures Challenge. PHA is asking people to record short videos of themselves thanking loved ones for being there for them when it was needed the most or thanking strangers for showing them kindness when it was least expected. This social media challenge runs through November. To learn more about the A Heart Cures Challenge, go to www.AHeartCures.org. There you will also find links to valuable resources about CTEPH, other forms of PH and PHA resources for patients and health care professionals.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Commemorating its 25th anniversary in 2016, 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, healthcare 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.