American Lung Association Launches Free Education and Support Program for Families Facing Rare Lung Disease

Today, in honor of Pulmonary Hypertension Awareness Month, the American Lung Association, with support from Merck, launched a new campaign to educate and support people with a rare and life-threatening form of the disease called pulmonary arterial hypertension (PAH).

Each year, about 500-1,000 people in the U.S. are diagnosed with PAH, which is a type of pulmonary hypertension that causes the tiny arteries in the lungs to become thickened and narrowed. This condition makes it more difficult for blood to flow through the lungs, causing a person’s heart to work harder, leading to high blood pressure. PAH is a rare, progressive disorder that is most common in women, ages 30 to 60, however it can occur in any age, including children.

“The symptoms of PAH are nonspecific, and because of that, it often takes a long time before a person receives a diagnosis. This can be an incredibly frustrating and overwhelming time for families,” said Harold Wimmer, President and CEO of the American Lung Association. “More education, resources and support for people going through a PAH diagnosis helps relieve the stress of this life-altering diagnosis. Timely treatment is key to improved health outcomes, and this is why this campaign is so important.”

There is no cure for PAH; however, numerous treatments are available to control symptoms and improve quality of life. After a PAH diagnosis, a specialist will help customize a treatment management plan that is right for each person. In addition to specialized medications, the plan may include pulmonary rehabilitation and supportive care options. Lifestyle changes, including a modified diet, exercise and quitting smoking, can help minimize symptoms.

The American Lung Association’s new free program includes:

• PH Basics: A new free online class to empower people to better understand the disease, new and worsening symptoms, treatment options and the importance of a treatment plan.
• Resources for Kids: New online resources are now available for parents who have a child with unresolved respiratory symptoms or a new PAH diagnosis.
• Lung Helpline: People with questions can call the free Lung HelpLine to connect with nurses and other experts who can provide answers about treatment options, support, accessing financial assistance and other resources.
• Better Breathers Clubs: The American Lung Association’s Better Breathers Clubs are nationally recognized support groups that have provided education and support to people living with chronic lung disease and their caregivers for over 50 years. Club members will benefit from the Lung Association’s new PAH Better Breathers Club Module, presented by trained facilitators, to strengthen disease management knowledge for those living with PAH. Learn more and join a Better Breathers Club here.

With the right care plan, including specialized medications, pulmonary rehabilitation, lifestyle changes and ongoing support, many people living with PAH can control symptoms and significantly improve their quality of life.

For more information about PAH and available resources, visit Lung.org/pah.