(StatePoint) Pulmonary hypertension (PH) is a serious condition that causes abnormally high pressure in the blood vessels between the lungs and the heart. In Pulmonary Arterial Hypertension (PAH), a rare and progressive form of PH, the tiny arteries in the lungs become thickened and narrowed, making it harder for the heart to pump blood.
Listening to the PAH Community
The American Lung Association, with independent grant funding from Merck, has launched a new campaign to gain insight from people living with PAH to help shape the development of educational resources for those living with the disease. Through online social listening and storyteller interviews, the campaign identified key needs for:
• Better recognition of symptoms and steps to take when talking to healthcare providers
• Easy-to-understand information on disease management and treatment options
• Support while navigating the often long and complex path to diagnosis and treatment
Shaping Education and Resources
Diagnosis of PAH is often delayed (sometimes 3 years or more) because symptoms mimic other more common conditions. Patient stories illustrate how frustrating this experience can be and highlight the need for greater awareness of PAH among patients and providers alike.
“I went to my primary care provider, had multiple emergency department visits and had seen more than one pulmonologist before finally being diagnosed with PAH. My symptoms were originally dismissed as asthma and being out of shape,” shared Jen C.
Patients also reported a need for more understanding of how to manage PAH. That’s why the American Lung Association is now providing free education online in easy-to-understand formats, including the PH Basics and Living with PAH 15-minute learning tools. The organization has also expanded resources focused on symptom recognition and advocating for comprehensive disease management.
Above all, the campaign highlights how important it is to elevate the patient voice. People living with PAH experience both emotional and physical impacts throughout their diagnostic and treatment journey. Their stories can help others better understand the disease and see practical examples of self-advocacy.
Take Jenna, who has lived with PAH for over a decade. “I told my specialist from the beginning that I wanted to keep traveling and working while managing my disease,” she said. Her determination and openness helped shape her treatment plan. And when Jenna found obstacles to traveling with medical devices and living with what she calls “an invisible disease,” she took action and researched traveling with a medical condition. Now she maintains a blog to help others. “I wanted to share real-life experiences for people like me that were missing from existing resources.”
For more information about PAH and access to free educational tools and support, visit Lung.org/pah.
Thanks to the collective voices of patients, those living with PAH can anticipate more support and better resources to guide them in their journey.
*****
Photo Credit: (c) Fuse Img / iStock via Getty Images Plus
