Katherine Kroner,
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Rare lung disease is often mistaken for asthma, COPD, other common conditions

Despite treatments, misdiagnosis causes patients to enter care too late

Orlando, Fla. – June 21, 2012 – Despite rapid progress in treatment for pulmonary hypertension (PH), an incurable lung disease, repeated misdiagnosis causes many patients to receive care only at advanced stages of the illness. In response, the Pulmonary Hypertension Association today launched an early diagnosis campaign to educate healthcare professionals to spot this disease and to refer patients earlier to specialty PH care.

Pulmonary hypertension is a rare and serious illness. Because its symptoms are similar to symptoms of more common ailments -- asthma, COPD, chronic heart failure, sleep apnea, obesity and lack of fitness -- PH patients are frequently misdiagnosed. Many receive a proper diagnosis only after being misdiagnosed by three or more doctors over a three-year period. Nearly three-fourths of patients have advanced pulmonary hypertension by the time they are diagnosed.

The new early diagnosis campaign, Sometimes it’s PH, will teach healthcare professionals to consider a pulmonary hypertension diagnosis when symptoms warrant and to team up earlier on with specialized PH physicians who can confirm diagnosis and offer a wider range of treatment, clinical trials and patient support networks.

The campaign will educate medical professionals by publishing articles in professional journals, developing new forums for educating about early diagnosis and referral, and joining with key professional and advocacy organizations on education and communication initiatives.

The campaign’s website,, presents evidence of the need for early diagnosis, educates professionals and patients about pulmonary hypertension and provides news of the campaign. It also features a 1-minute video about early diagnosis. The campaign makes zebras and their stripes a symbol of PH, which is likened to a “medical zebra.” The image reverses the lesson young diagnosticians receive in training: “When you hear hoof beats, think horses not zebras.”

A multi-year campaign, Sometimes it’s PH will communicate with primary and specialty care providers including internists, family physicians, nurse practitioners, cardiologists, pulmonologists, rheumatologists, hematologists, pediatricians, gynecologists and allied health professionals. PH patients and their families will also be encouraged to ask their doctors about pulmonary hypertension.

The campaign was announced by its chairman, internist and pulmonologist Lynn Brown, MD, PhD, at PHA’s 10th International PH Conference and Scientific Sessions, the world’s largest gathering of pulmonary hypertension professionals and patients. Approximately 1,500 will attend, including approximately 300 health professionals and 400 patients, many bringing their families and caregivers.

Characteristics of Pulmonary Hypertension

Pulmonary hypertension is a condition in which the arteries between the heart and lungs become narrow and stiff, ultimately resulting in heart failure. PH causes the right side of the heart to work too hard to pump blood into the lungs. This results in PH symptoms including shortness of breath, fatigue, chest pain, dizziness, fainting and edema. Short walks can leave patients exhausted, and simple activities such as getting dressed or cleaning house can become challenging. While women are four times more likely to develop pulmonary hypertension than men, the illness affects people of all ages, all ethnicities and in all parts of the world.

Once rapidly fatal, now treatable

“Pulmonary hypertension, once a rapidly fatal disease, has been transformed into a serious but treatable condition,” Dr. Brown said. “Yet diagnosing PH is challenging, because PH symptoms can also indicate many other diseases. As a result, too many patients only receive proper care after PH has already forced them to stop working and become dependent on their families.” Dr. Brown is an assistant professor at the University of Utah School of Medicine and associate director of the pulmonary hypertension program at Intermountain Health Center, Murray, Utah.

Sometimes it’s PH responds to a call to action in a November 2011 white paper, Pulmonary Arterial Hypertension: Recommendations for Improving Patient Outcomes (, written under PHA’s leadership by a group of pulmonary hypertension experts from around the globe. It concluded that delays in diagnosis of PH and referral to specialized care are the main barriers to better patient outcomes. It described optimal care as a collaboration between primary and specialty care providers.

Since 1996, nine treatments have been developed for pulmonary hypertension. Among the approximately 7,000 rare diseases in the U.S., only two have as many or more treatments available.

“While we continue to work for a PH cure, early diagnosis has become our next major priority,” said PHA President Rino Aldrighetti. “With earlier diagnosis we expect to be far more successful in saving lives, extending lives and improving the quality of life for PH patients.”

About the Pulmonary Hypertension Association

PHA, headquartered in Silver Spring, Md., is the country’s leading organization connecting pulmonary hypertension patients, families, and medical professionals. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, advocacy and awareness. PHA provides free access to information on its website about pulmonary hypertension and facilitates over 240 support groups around the nation, helping many of the estimated 20,000 - 30,000 diagnosed patients in the U.S. To learn more about PHA, visit:

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.