Pulmonary Hypertension Association Launches First Annual CTEPH Awareness Day

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The Pulmonary Hypertension Association (PHA) has launched the first-ever CTEPH Awareness Day to raise awareness about Chronic Thromboembolic Pulmonary Hypertension (CTEPH) – a form of pulmonary hypertension that is caused by old, organized blood clots in the lungs.The organization is looking to BUST CTEPH by promoting Better Understanding, Screening and Treatment.

BUST CTEPH

In October of 2011 when I was diagnosed with CTEPH I was told I could expect to live a maximum of five more months. Fortunately I was referred to an expert center where I was deemed a surgical candidate and given another chance at life.

The Pulmonary Hypertension Association (PHA) has launched the first-ever CTEPH Awareness Day to raise awareness about Chronic Thromboembolic Pulmonary Hypertension (CTEPH) – a form of pulmonary hypertension that is caused by old, organized blood clots in the lungs. Pulmonary hypertension (PH) is a rare and debilitating disease of the lungs that affects the functioning of the heart and can lead to right heart failure.

CTEPH is an often overlooked form of PH. In most patients who have suffered a blood clot in the lungs (pulmonary embolism), blood thinners are enough to restore blood flow, improving breathing and exercise tolerance. However, a minority of patients do not respond adequately to blood thinners and develop CTEPH. It is important to note that patients may develop CTEPH without any known history of blood clots.

CTEPH, like other forms of PH, is a rare, progressive and debilitating disease. Unlike other forms of PH, however, a surgical cure for CTEPH exists for patients who are candidates. Because of the complex and highly specialized nature of the procedure, called pulmonary thromboendarterectomy (PTE surgery), every patient diagnosed with CTEPH requires evaluation by an expert CTEPH team, including CTEPH physicians and PTE surgeons, to assess their candidacy for PTE surgery. PHA’s Early Diagnosis Campaign Manager, Jessica Armstrong, knows firsthand the importance of expert evaluation: “In October of 2011 when I was diagnosed with CTEPH I was told I could expect to live a maximum of five more months. Fortunately I was referred to an expert center where I was deemed a surgical candidate and given another chance at life.”

Jessica feels fortunate to have been a candidate for this life-saving operation and to have benefited from an early, accurate diagnosis of the disease and referral to an expert center. “Today, through my work with the Pulmonary Hypertension Association, I’m able to fight back against this disease and I am delighted that, three years after being given just months to live, I’m here to celebrate the very first CTEPH Awareness day.”

“Because CTEPH has a potential cure, it is imperative that patients with this disease are identified early,” said Rino Aldrighetti, President and CEO of PHA. “Early diagnosis is crucial for PH and CTEPH patients and CTEPH Awareness Day shines a light on accurate diagnosis and treatment methods.”

PHA wants to BUST CTEPH, by promoting Better Understanding, Screening and Treatment of the disease, and has developed a number of resources to help raise awareness, including:

  •         CTEPH pages on PHAssociation.org
  •     http://www.PHAssociation.org/CTEPH
  •     http://www.PHAssociation.org/AwarenessMonth/CTEPHDay
  •     A new slogan, “BUST CTEPH” advocates for “Better Understanding, Screening and Treatment” of the disease.
  •     A year-long webinar series on CTEPH for medical professionals and patients.
  •     Illumination of Niagara Falls in purple at 8 p.m. on November 18 in honor of CTEPH Awareness Day.
  •     An outcome evaluation survey, measuring knowledge of CTEPH before and after CTEPH Awareness Day.
  •     Dinner and a live Q&A webinar with some of the top physicians and allied health professionals in the field hosted by PHA for CTEPH patients and their families, at their headquarters in Silver Spring, Md. on CTEPH Awareness Day. Those who are not local to the area can participate remotely at https://cc.readytalk.com/r/ivp7aeixgers&eom.

Organizations officially supporting CTEPH Awareness Day include: the Blood Clot Recovery Network, the American Venous Forum and ClotCare Online Information Service.

About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country's leading pulmonary hypertension organization. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, research, advocacy and awareness. PHA does 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 PH Online University.

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Renee Hockaday
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