BUILDING BRIDGES TO FIGHT PH: THE STORY OF PH ISRAEL

PHA IsraelBy Shiri Ben-Artzi Padmore, Founder

It is said that “Necessity is the mother of invention.” I guess it’s the mother of associations as well.

When I was diagnosed with pulmonary hypertension in July 1999, I was overwhelmed by fear, confusion, loneliness and a sense of betrayal by my body. But when I asked myself what were my needs, I realized my most urgent need was for companionship, for someone who had “been there” and who could understand me, someone who would listen to all my questions and try to answer them, someone who wouldn’t be afraid of my tears and wouldn’t judge my jokes.

So I founded PH Israel. It began with a dream that I had written on a piece of paper. I truly believe that when you pursue a dream with love and commitment, the universe aligns itself with you and opportunities start presenting themselves. Opportunities began meeting me along the way — in the form of fellow PH patients who were willing to take part and who offered support, advice and encouragement, doctors who decided to cooperate and help, and pharmaceutical representatives who willingly contributed to the best of their abilities.

I started by contacting doctors in hospitals all over the country for the purpose of raising awareness within the medical community. More importantly, I was trying to get to know and talk to as many patients as possible. Within a month I had reached enough people to register an association. We got help from a lawyer who was willing to do the work pro-bono and we were on our way! We were all very excited, but our guideline was that it would be an association of patients, family members and medical professionals for the benefit, well-being and support of PH patients and their families. We made a point of staying an independent organization.

Six months later, in 2000, we had our first conference. It was wonderful! A lot of new people attended and signed up as members, a board of directors was elected and it felt like the sky was the limit. It’s been nine years since the PH Israel was founded and today we have a wonderful support group, a newsletter and an Internet site.

As an association, we make a point of keeping a good working relationship with the five PH-treating doctors in Israel. It’s not as easy as it sounds, but we believe that it’s crucial if we want to maintain our status as an independent patient advocacy organization — one that is not aligned to any one doctor or medical institution.

A considerable amount of time and effort is devoted to local and national advocacy on behalf of patients dealing with various bureaucratic and/or civil rights issues. This is one of the most demanding aspects of the association’s work but one of the most important ones, as well.

PH Israel is an extraordinary example of a multicultural association raising awareness for PH in a socially and politically conflicted country. We have members of the Jewish, Muslim, Christian and Druze faiths speaking Hebrew, Arabic, English, Russian, Amharic, French, Spanish and Yiddish working together as a family. We have even succeeded in helping patients from Palestine. These patients receive treatment and medication from Israel without any cost and PH Israel was involved, indirectly, in making that happen.

We are sharing, comforting, supporting, fighting, crying and laughing with one another, putting aside our religious and ethnic differences as we become a community of hope.

Because of the political and social conflict within our country in order to bring together people of different religious and ethnic backgrounds we have found that some ‘ground rules’ were necessary. First and foremost, the association is “Neutral Territory.” Anything that divides the members or hinders the vision or goals of the association stays out! Incorporate the multicultural nature of the organization into statutes in the form of tolerance, acceptance and specific rules of conduct. Beneath our exterior differences, we all share the same basic experiences, including living with PH. We all share the same pain, fear, and need for hope. When we can see these things in one another the differences fade. Finally, there is no one right way to get things done. You must acknowledge the hardships of others and respect the different paths people use to reach the same goal.

Being a part of a PH association means being a part of something bigger than oneself – playing a bigger game in life – it requires the ability to rise above social stigmas and prejudice. At the end of the day it’s all about hope. Hope for a better tomorrow, hope for new treatments, hope for a cure and hope for love and comfort. Our hope feeds our faith and our dreams; with it, we are invincible.

© 2006

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.