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Pulmonary Hypertension Patients to Hear from Saint Louis Doctor Diagnosed with their Disease as Pulmonary Hypertension Association Holds PHA on the Road in Saint Louis

Gillian Stephens was a resident, just starting her career, when she learned that what she thought was asthma was a progressive, life-threatening disease. She has pulmonary hypertension (PH), high blood pressure in the blood vessels of the lungs, which puts pressure on the heart and can lead to death from right heart failure.

As if her diagnosis was not enough, she learned her 21-year-old daughter also has PH, which experts classify as a rare disease.

With symptoms that include shortness of breath, fatigue and fainting, PH too often looks like asthma or other less threatening illnesses. Without treatment, the average survival rate can be as low as 2.8 years after diagnosis.

Dr. Stephens will be the keynote speaker this Saturday, October 10, 2015, at the Pulmonary Hypertension Association’s PHA on the Road: PH Patients and Families Education Forum – a free, full-day, regional education forum that delivers much-needed PH education and support to patients and families in areas close to home. The forums feature interactive presentations, education sessions and networking opportunities for patients, caregivers and medical professionals. PHA on the Road will be held at the Hyatt Regency Saint Louis at the Arch in Saint Louis, Mo., from 8:30 a.m. to 5 p.m.

After starting on her treatment plan and adjusting to her new life, Stephens decided the only way forward was to return to her residency and continue pursuing her plan of becoming a board-certified family physician.

“So there I was in my white coat, wearing oxygen and my fanny pack with my pump, seeing patients in clinic and in the hospital just like the other residents,” said Dr. Stephens.

Dr. Stephens suffered many setbacks on her journey, but at age 55, completed her residency and became a board-certified family physician.

She helped to start a new practice and began teaching medical students. Dr. Stephens went on to serve as Medical Director of the Department of Family and Community Medicine at Saint Louis University before her health forced her to retire. Her daughter returned to college and is now a registered nurse.

“We are unique individuals AND we have pulmonary hypertension,” said Stephens when speaking of patients with whom she relates first hand. “We are not our disease.”

PHA, the world’s first and the nation’s only comprehensive pulmonary hypertension association, provides patient and caregiver support, public awareness and advocacy programs, and medical education services. PHA also funds research to find ways to prevent and cure PH.

PHA designed the PHA on the Road program to reach PH patients, caregivers and medical professionals across the country each year, especially those who are not able to travel to PHA’s International Conference and Scientific Sessions held every two years.

“Dr. Stephens’ story will empower other patients and inspire them, their caregivers, and healthcare professionals who have the opportunity to attend PHA on the Road,” said Rino Aldrighetti, PHA’s President and CEO.

PHA, which marks its 25th anniversary in 2016, connects and works together with the entire PH community of patients, families and medical professionals. The community of PH-treating physicians has grown from 100 in 1994 to more than 10,000 today. Since PHA’s founding, the number of PH treatments has grown from one to 12.

For 12 consecutive years, PHA has earned Charity Navigator’s highest rating—four stars—for fiscal accountability and transparency, placing it in the top half of one percent of all rated charities.

For more information about PHA on the Road, please contact ontheroad(at)phassociation(dot)org.

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 find ways to prevent and cure pulmonary hypertension and provide hope for the community through support education, research, and advocacy and awareness. PHA does this by connecting and working together with the entire PH community of patients, families and medical professionals. PHA relies on donations to fund its many programs, including early diagnosis efforts, more than 245 support groups around the country, and continuing education for medical professionals offered through PHA Online University. To learn more about pulmonary hypertension and PHA, visit

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