For many patients with Pulmonary hypertension (PH), their path to diagnosis of this rare lung disease starts with the feelings of exhaustion and general fatigue. In fact, some patients may have very few clues to their illness while others may have several. Many times there is a long period before PH has been correctly diagnosed. Recently, many supporters of patients with PH rallied to raise awareness.
Pulmonary hypertension (PH) is increased pressure in the blood vessels of the lungs that can lead to death from right heart failure. With symptoms that include shortness of breath, dizziness and fatigue, appropriate therapy is often delayed when the disease is misdiagnosed as another illness, such as asthma.
World Pulmonary Hypertension Day
Annually, on May 5th, patients and pulmonary hypertension organizations and groups world-wide celebrate the more than 25 million people living with PH. World Pulmonary Hypertension Day is series of events and activities around the world designed to bring awareness to the general public and facilitate early diagnosis.
You can join the PH community by visiting the World PH Day Facebook Page.
World PH Day began in 2013 in Madrid, Spain. The May 5th date was selected to recognize the anniversary of Spain’s first PH death in a child. Over 30 years ago, poisonous rap seed oil led to pulmonary hypertension in the child, which caused the child’s death.
Pulmonary Hypertension Association
Founded in 1991 in Florida, the Pulmonary Hypertension Association (PHA) is an international group of pulmonary hypertension (PH) patients, their caregivers, family members and healthcare professionals.
Envisioning a world without PH, PHA credits progress with treatment, care, awareness and research to PH community-serving associations around the world working as allies in the fight against the disease.
“In 25 years, here in the U.S., we’ve gone from zero to 14 treatments, which is as many or more than the number of drugs approved to treat all but two of the roughly 7,000 rare diseases. Many countries have seen similar progress. As an international PH-community, we stand with those worldwide who seek access to PH therapies. We’re empowered in our fight to conquer this disease and improve life for PH patients and families universally.”
— PHA President and CEO Rino Aldrighetti
This year’s World PH Day commemoration comes as PHA marks its 25th anniversary and one month before PHA’s International PH Conference and Scientific Sessions, where PH-serving organizations will gather patients, caregivers, families, clinicians, donors and researchers to network and exchange ideas and knowledge.
The 2016 International Conference, June 17-19 in Dallas, Texas, is expected to draw nearly 2,000 people from over 30 nations.