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Issues of the Day An International Community Fights Breathlessness

I traveled to Spain was to attend the General Assembly Meeting (Sept. 8-11) of the European Pulmonary Hypertension Association, where I was one of two representatives of the Israel Pulmonary Hypertension Association. This was my second time as a participant in the conference, which this year, as last, was conducted in Casteldefells, a seaside community just outside of Barcelona.

Representatives from over twenty countries, ranging from Scandinavia,  continental Europe, the Baltic states, Russia, Israel, and Turkey gathered to discuss various aspects of the disease, which is debilitating and often lethal when not adequately managed. Currently, for most types of PH, there is no cure. It is a "rare" disease, a class of illness which affects not an insignificant population: An estimated six to eight people out of a hundred have a rare disease.

Until about a year ago, I had PH. In my case it was secondary to liver disease which has since resolved. For most patients today,  PH cannot be overcome but only controlled – and this for only those who have been diagnosed and are under treatment for  the disease. There is a larger pool of people who have not yet been diagnosed or are undertreated or untreated.  Stories abound of people who have the disease, but have been misdiagnosed and are not getting the care they require. PH is not widely known, even among medical professionals.     

In a post that appeared in Green Prophet a year ago, I described PH patients and the associations that represent them, their families, caretakers and increasingly the clinicians that treat them, as a community of angels.  Following the four days I spent with my counterparts, many of whom have now become dear friends, I can happily report that we are growing: New patient associations will soon or have already joined us in countries like Finland, Russia and Slovenia, our activities are intensifying, and our program is becoming more ambitious.

We have forged a collectivity that transcends borders, languages and cultures to enhance the lives of PH sufferers and, perhaps, to defeat the disease through research, enhanced screening, referral to expert centers, and more efficacious treatment.

During the meeting, while keeping marginally aware of the events taking place in the Middle East and elsewhere on the planet, I could only think how wonderful a place the world could be were coexistence and common cause the principles that guide us.

© Yosef Gotlieb, . All rights reserved