Pulmonary Hypertension Association (PHA) Spreads Awareness About Deadly Disease Linked to Chronic Blood Clots

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PHA marks World Thrombosis Day: Today, Oct. 13, the Pulmonary Hypertension Association (PHA) joins the International Society on Thrombosis and Haemostasis in raising awareness about blood clots, in particular those that block arteries in the lungs.

Today, the Pulmonary Hypertension Association (PHA) joins the International Society on Thrombosis and Haemostasis in raising awareness about blood clots, in particular those that block arteries in the lungs. Oct. 13 is World Thrombosis Day, which raises awareness about life-threatening blood clots.

With the world’s focus on this deadly condition, PHA is preparing for Pulmonary Hypertension Awareness Month in November. Pulmonary Hypertension (PH) is an often misdiagnosed life-threatening disease that can lead to death from right heart failure. On Nov. 15, PHA will raise awareness about chronic thromboembolic pulmonary hypertension or CTEPH, a form of PH that results from old blood clots in the lungs.

Awareness for people with PH is a matter of life or death. In PH, arteries in the lungs can become narrow and stiff, putting pressure on the right side of the heart, causing it to enlarge as it works extra hard to push blood through those arteries. Common symptoms of PH include shortness of breath, fatigue and chest pain, and the disease is often misdiagnosed, for example, as asthma. This leads to delays in proper diagnosis and treatment, costing patients valuable time. With early diagnosis, proper treatment can extend and improve PH patients’ quality of life.

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 one of the pulmonary arteries in the lungs. While there is no cure for other forms of pulmonary hypertension (PH), CTEPH patients may be candidates for a pulmonary thromboendarterectomy or PTE, a surgical procedure to remove the chronic clots that can potentially reduce or even normalize blood pressure in the lungs. Patients who are not able to have a PTE, or those with PH that remains after surgery, may be candidates for oral medication approved by the FDA for CTEPH.

With early diagnosis, a number of FDA-approved treatments can extend and improve 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.

As part of its Nov. 15 CTEPH Awareness Day events, PHA 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) an educational webinar for patients, to be hosted on PHA Classroom, and a webinar for clinicians, to be hosted on PHA Online University. In addition, PHA will host a social media CTEPH Awareness video competition.

Funding from Bayer Healthcare supports PHA’s CTEPH Awareness Day efforts.

As part of its Awareness Month activities, the Pulmonary Hypertension Association (PHA) is inviting people from all walks of life to publicly acknowledge random acts of kindness by taking the A Heart Cures Challenge. PHA is asking people to record a 10-30 second video of themselves thanking loved ones for being there for them when it was needed the most or strangers for showing them kindness when it was least expected. The social media challenge runs through November, which, in addition to being the month of giving thanks, is Pulmonary Hypertension Awareness Month.

To learn more about CTEPH, go to http://www.bustCTEPH.org. To learn more about the A Heart Cures Challenge, go to http://www.AHeartCures.org. On Nov. 1 when the #AHeartCures challenge begins, http://www.AHeartCures.org will also provide valuable links about CTEPH and other forms of PH and PHA resources for patients and healthcare 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 http://www.PHAssociation.org and connect with PHA on Twitter @PHAssociation and on Facebook at http://www.facebook.com/PulmonaryHypertensionAssociation.

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Jordan Jennings
@PHAssociation
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