Day of Awareness Could be a Lifesaver for Sufferers of Blood Clot-Related Disease: Pulmonary Hypertension Association Celebrates Life with Second Annual BUST CTEPH DAY

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The Pulmonary Hypertension Association is raising awareness about CTEPH, a rare form of pulmonary hypertension (PH), where awareness is a matter of life or death.

For the second year, more Americans will be armed with information about a rare disease for which awareness is a matter of life or death. Nov. 17 is the second annual CTEPH Awareness Day, also known as “BUST CTEPH DAY.”

CTEPH, short for chronic thromboembolic pulmonary hypertension, is a form of pulmonary hypertension (PH) caused by old, organized blood clots in the lungs. PH is high blood pressure in the arteries of the lungs that can lead to death from right heart failure. Without treatment, the average survival rate for PH patients is 2.8 years after diagnosis. But because the symptoms, which include shortness of breath, chest pain, dizziness, and fainting, are similar to those in other less threatening diseases, PH is often misdiagnosed.

The Pulmonary Hypertension Association (PHA) established CTEPH Awareness Day in 2014 to raise awareness about CTEPH, which occurs in up to 3.8 percent of patients who suffer from pulmonary embolisms (blood clots in their lungs). PHA provides patient and caregiver support, education programs for healthcare professionals, and grants to help researchers find ways toprevent and cure the disease.

While there is no cure for other forms of PH, CTEPH patients may be candidates for a pulmonary thromboendarterectomy or PTE, a surgical procedure to remove the clots that can significantly reduce or even normalize blood pressure in the lungs. As part of its Nov. 17 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.

On CTEPH Awareness Day, PHA will host a number of “BUST CTEPH” events, promoting the important message that Better Understanding, Screening and Treatment can be lifesaving for patients with this disease. The events will include celebrations and educational forums, featuring CTEPH healthcare specialists and survivors, including Jessica Armstrong, who heads PHA’s Early Diagnosis Campaign. Armstrong recently competed in The Rock ’n’ Roll Philadelphia Half Marathon, raising awareness and funds to combat CTEPH, alongside fellow CTEPH patient and Iraq war veteran, Latoynia Ransom-Harvey.

“The scariest Halloween I ever experienced was in 2011. That’s when after months of believing I had asthma or some other disease, I was diagnosed with CTEPH and told it had progressed to the point that I had only five more months to live,” Armstrong said. “Fortunately, I was immediately scheduled for the PTE procedure, which gave me my life back.”

PHA and its partner organizations will host a number of CTEPH Awareness Day events:

  • PH treatment centers around the country will host CTEPH Awareness Day celebrations.
  • Pioneer PTE center, the University of California, San Diego, will host its first PTE patient reunion on Nov. 14.
  • A live Spanish-language Q&A webinar with top physicians Dr. Gustavo Heresi-Davila of the Cleveland Clinic, Dr. Josanna Rodriguez-Lopez of Massachusetts General Hospital, and Dr. David De La Zerda of the University of Miami Hospital will take place at 8 p.m., Monday, Nov. 16.
  • A live Q&A webinar, in English, with top physicians Dr. William Auger of the University of California, San Diego, Dr. Victor Test of Duke University Hospital, and Daniela Brady, FNP, of Columbia University Hospital will take place at 2 p.m., Nov. 17, CTEPH Awareness Day.
  • PHA will host a Twitter chat at noon ET on Nov. 17, CTEPH Awareness Day (#CTEPHAwarenessDay, #BUSTCTEPH): https://www.thunderclap.it/projects/33113-cteph-awareness-day?locale=en
  • PHA will host CTEPH Awareness Day events on Nov. 17 at its headquarters in Silver Spring, Md., and at its chapter offices in Chicago, New York, Los Angeles and The Woodlands, Texas.

For more information about CTEPH Awareness Day, go to http://www.PHAssociation.org/CTEPHDay

About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., with a growing list of chapters across the country, the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Its 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 and medical professionals. Among its programs, PHA facilitates more than 245 support groups around the country and delivers continuing education for medical professionals through PHA Online University. For 12 consecutive years, PHA has received the highest rating — four stars — for fiscal accountability and transparency from Charity Navigator, placing it in the top half of one percent of all rated charities. For more information, please go to http://www.PHAssociation.org, @PHAssociation on Twitter or http://www.facebook.com/PulmonaryHypertensionAssociation.

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