WHAT IS WORLD PH DAY?
Every year on May 5, pulmonary hypertension organizations and groups around the world participate in World Pulmonary Hypertension Day activities to raise awareness of this frequently under- and misdiagnosed disease and celebrate the lives of people living with PH. World PH Day brings global attention to the importance of improving the quality of life and raising the life expectancy of the more than 25 million people living with PH worldwide.
During the celebration of World PH Day, pulmonary hypertension organizations work to:
- Increase awareness and understanding of the disease to promote early diagnosis. Early diagnosis is important in decreasing premature PH-related deaths.
- Promote access to health care and treatments that increase quality of life and raise life expectancy.
- Promote the concept of holistic care, which includes treating the whole PH patients, the physical, psychological and social aspects of the disease.
- Promote research that will help find the cure for pulmonary hypertension.
In 2012, a program and a scientific symposium were held in Madrid, Spain as the first World PH Day celebration. The day was officially endorsed by 22 patient associations, 10 rare and affiliated disease organizations and eight scientific societies. May 5 was originally chosen as World PH Day because it is the anniversary of the first child’s death in Spain from pulmonary hypertension as a result of toxic rapeseed oil more than 30 years ago.
World PH Day in Ukraine
Pulmonary hypertension is an invisible disease, insidious and ruthless, rare and unpredictable. The patient, like Don Quixote, enters into an unequal duel. Fight for his own life. It takes sometimes three years to get to know the enemy. Endless diagnostics, passing more and more tests. Life turns into a nightmare. Constant shortness of breath, fatigue, blue face, loss of consciousness. And it would seem that this is the long-awaited answer. But here are new challenges. Treatment. Correctly selected doses of drugs, and the medicines themselves. Original or generic. Tablets, inhalation or subcutaneous. Depends on the country. There are 17 drugs with different ways of action in the world. In Ukraine, at the moment, the patient has access to only 4 of them. Why?
Treatment becomes lifelong. But this is only 50% of success. Proper and healthy nutrition, which no one talks about, is an important component of a quality life. And in addition, physical rehabilitation and psychological support, which form a comprehensive treatment program. Unfortunately, an institution that would provide such assistance does not yet exist in Ukraine.
There are more than 800 PH patients in Ukraine, including children. They all need support. One way is to spread information about pulmonary hypertension. The information barrier is probably the most difficult. Every banner, city light or even flyer, every video or simple conversation, every post on social networks about PH. All these things help patients to become visible. That seemed impossible seven years ago had now become a reality.
Dozens and hundreds of people declare their support for PH patients every year on May 5. This day became a symbol of the fight against the disease.
We thank everyone who has joined us and is ready to continue to support PH patients. It is very important and valuable for each of us.