The recognition and declaration of a World Pulmonary Hypertension Day is a step forward in the consolidation of worldwide PH awareness. World PH Day will focus on the importance of improving the quality of life and life expectancy of more than 25 million people living with PH worldwide.
Pulmonary Hypertension is a fatal disease that is difficult to diagnose. There are many types of PH, including idiopathic and hereditary PH, which are registered rare diseases in the Spanish Registry of Rare Diseases. However, PH is most common as a result of other health problems. May 5 is a significant day for the PH community because it marks the first pediatric PH death in Spain as a result of toxic cooking oil; this child died more than 30 years ago.
Regardless of its etiology, PH is defined as an increase in blood pressure in the pulmonary artery, pulmonary veins or pulmonary capillaries, together known as the lung vasculature. It is a severe disease with a markedly decreased exercise tolerance that leads to heart failure.
Objectives: during the celebration of WPHD the patients’ organizations will launch messages on the need to:
– Increase awareness and disseminate knowledge of the disease to facilitate early diagnosis. Early diagnosis is important in decreasing premature PH related deaths,
– Promote access to specific healthcare and treatments that increase quality of life and life expectancy,
– Promote the concept of treating PH patients as a whole, which includes treating their physical, psychological and social issues,
– Unify international criteria for the recognition of Centers of Excellence in PH,
– Promote research that will help find a cure for PH.
ANHP is currently working to get a Declaration of Health Interest by the Spanish Ministry of Health as well as “curricular credits” for the Spanish physicians attending the Symposium.