Pulmonary Hypertension Association Marks Rare Disease Day with Outreach to People who have PH and Don’t Know it and those at Risk for Developing the Deadly Disease


February 15, 2017
Kelly D. Williams
PHA Communications

Silver Spring, Md. (Feb.15, 2017) – The Pulmonary Hypertension Association (PHA) will take to social media on Tuesday, Feb. 28, Rare Disease Day 2017, to make sure more people who have pulmonary hypertension (PH) are diagnosed early and accurately.

PH is increased pressure in the blood vessels of the lungs that can lead to death from right heart failure. Common symptoms are non-specific and include shortness of breath, fatigue and chest pain. A chronic, deadly rare disease, PH can exist alone or in association with other illnesses, many of them rare diseases – such as, HIV, scleroderma and lupus. Consequently, the progressive disease is often misdiagnosed—for example, as asthma—which leads to delays in proper diagnosis and treatment, costing patients valuable time.

PHA will share memes on social media during Rare Disease Day to provide simple statistics and facts to make people with associated diseases aware of their PH risk. For example, estimates are that up to 30 percent of screened sickle cell anemia patients could develop at least mild PH in adulthood; autopsy results indicate changes in the lungs of approximately 75% deceased individuals with sickle cell disease that are similar to one form of PH, pulmonary arterial hypertension (PAH). Experts estimate that between 8 and 12 percent of scleroderma patients could also have PH; and up to 9 percent of lupus patients could have at least mild PH.

PHA’s Rare Disease Day memes will lead people to PHAssociation.org, where they can learn more about PH and PHA’s many resources, including support groups, informational materials, myPHA (myPHAssociation.org), PHA’s patient and caregiver social networking site, telephone support lines and toolkits for those who wish to engage with others in the community to fight PH. For the social media effort, PHA is inviting PH support groups, patients, caregivers and health care professionals to show solidarity on social media and to help PHA reach others who can benefit from its patient and health care professional programs.

Rare Disease Day is a global initiative on the behalf of the National Organization for Rare Disorders (NORD) and The European Organization for Rare Disorders (EURORDIS) to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives. A disease or disorder is defined as rare in the U.S. when it affects fewer than 200,000 Americans. In keeping with the international spirit of Rare Disease Day, PHA will also highlight global resources through public and closed social media communications. PHA’s global partnerships have created new opportunities for the worldwide PH community, and PHA is a resource for more than 80 PH associations around the world.

About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families, health care professionals and researchers. For more information and to learn how you can support PH patients, visit www.PHAssociation.org and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at www.facebook.com/PulmonaryHypertensionAssociation.