National Awareness Campaign Bringing Attention To A Rare Lung Disease

A new national disease awareness campaign called “Faces of PAH” is bringing attention to a rare, underrecognized lung disease known as pulmonary arterial hypertension (PAH). Created by the Pulmonary Hypertension Association (PHA), the leading PAH advocacy organization, “Faces of PAH” seeks to raise PAH’s profile in the United States, and provide insight into both the medical and personal aspects of this life-threatening disease.

The initiative focuses on the stories of PAH patients through a series of doctor/patient interviews with national and local media. “Faces of PAH” patient ambassadors will highlight their experience with the disease, while thought-leading PAH doctors will provide an overview of symptoms, diagnosis and treatments.

PAH causes high blood pressure in the lungs due to narrowing and stiffening of the vessels that supply blood to the lungs. As these arteries become increasingly constricted, less blood is able to flow out of the right side of the heart for re-oxygenation in the lungs. The heart must pump harder to overcome the resistance, and this stress causes it to enlarge and lose pumping strength, leading to worsening of symptoms and, ultimately, heart failure.

Symptoms of PAH include:

- Breathlessness or shortness of breath

- Fatigue

- Dizzy spells

- Fainting

- Chest pain, especially during physical activity

- Swollen ankles and legs.

PAH afflicts hundreds of thousands of people worldwide, but it is estimated that many of these individuals have not been diagnosed and are not receiving treatment. The disease can affect people of all ages and backgrounds, but primarily occurs in those 20 to 40 years old and is more prevalent in women than men.

“PAH has a history of being overlooked and misunderstood by most Americans,” said Rino Aldrighetti, Pulmonary Hypertension Association President. “‘Faces of PAH’ will share the stories of heroic PAH patients and their families in an effort to increase understanding of this debilitating disease.”

The Pulmonary Hypertension Association is a Washington, D.C.-based nonprofit membership organization with a mission to seek a cure for pulmonary hypertension and provide hope for the pulmonary hypertension community.

The “Faces of PAH” campaign is made possible by an unrestricted grant from Encysive Pharmaceuticals.

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