Monday, May 14, 2012

World PH Day…a first among many

As a community grows, it develops traditions and opportunities.

The First World PH Day – celebrated on May 5, 2012 – offered both of those.  As patient and medical leaders from five continents gathered in Madrid, Spain for the Scientific Session and Celebration, I couldn’t help but think of how far we’ve come in so few years.
The first patient with PH was diagnosed just over 120 years ago, in 1891, by Dr. Ernst von Romberg, a German physician and clinical scientist. 
Sixty years later – in 1951 – after identifying just over 30 cases in the U.S., Dr. David Dresdale gave the disease its name. 
Ninety years later – in 1981 – the National Institutes of Health began a five year registry which enrolled 187 patients across the U.S., providing the first clear picture of the disease.
In January of 1991, 100 years after Dr. Romberg made the first identification of a PH case and forty years after Dr. Dresdale named it, four women sat around a kitchen table in Florida. Three were patients, one was a caregiver and two were also medical professionals (nurses).  Their coming together set in motion the beginning of a PH community and acceleration for change.  Their action led to the first PH association in the world.  Today, there are 58 such national associations throughout the globe.
Five years after PHA was founded, the first disease-specific treatment for PH was approved by the FDA.  Today, there are nine treatments – as many or more than all but two of the 7,000 rare diseases identified in the U.S.  PH association networks are flourishing in Europe  and Latin America.  Asia and North America are active and the South African PH association is a beacon in Africa.
It was great to celebrate with Juan Fuertes and Irene Delgado (who conceived of, organized, fundraised for and inspired the First World PH Day for which we again thank the Spanish PH association, ANHP.  It was an honor to be with leaders like Noriko Murakami who built PHA Japan Cecilia Martinez Ramirez who founded HAP Mexico, Denneys Niemandt, who one by one, told the stories of the 25 patients diagnosed in South Africa, Yvetta and Peter Makovnikova, developers of a Slovakian PH association, Dr. Majdi Idrees, president of the Saudi Association for Pulmonary Hypertension SAPH, Enrique Carazo Minguez, president of the other Spanish association, FCHP, Gerry Fischer, founder of PHA Austria and president of PHA Europe and that network’s vice president Pisana Ferrari who also leads the Italian association, AIPI.  Many others were there including globally recognized PH physicians, such as Drs. Galie, Rubin, and Simmeneau.
There will be many future World PH Days but the traditions began with this one and I have no doubt the opportunities will continue to emerge.  But, as always, we are driven by the stories.  Here’s one to close this blog.  It is a reminder for me why we do what we do... 
A woman came up to me at the World PH Day celebration and said, “I have to thank you.”  When I asked her why, she said that she had been diagnosed before there was a Spanish association and continued, “I came to the PHA website to learn about the disease and how it affected the lives of others like me. Actually, I have to thank you twice.”  When I asked why again, she said, “When I came to PHA's site I didn’t know how to read English.  The information was so important to me that I forced myself to learn to read the language from the site.” 

I regret that I have forgotten her name but I will never forget what she taught me about the importance of the work that we all do.

5 comments:

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  2. I have had PH for over 2 yrs. There is no PH specialist in the small town where I live. Can someone please tell me what the 9 treatments in this article are?

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    1. There are a lot of patient resources at www.phasoociation.org Once there, click on the Patients tab. Under About PH, click on Treatments and you'll find fact sheets on each. Also, on the Find A Doctor tab ander About PH, you'll find a video on how to talk to your doctor. Right under the video are questions you can ask your doctor. I hope this is helpful.

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  3. What an amazingly unprecedented time we live in!

    I feel extremely honored to be involved in this movement - even if it's just in a small way. As I've said before, I am waiting with bated breath to see where we go from here!

    Anonymouns -- You can find more information on PH specific medication on the PHA's website (http://www.phassociation.org/page.aspx?pid=977).
    In short, the nine PH specific medications are: Revatio, Adcirca, Letairis, Tracleer, Ventavis, Tyvaso, Remodulin, Flolan, and Veletri.

    These medications are known by several names (brand, generic, etc.). If you need further assistance, feel free to contact me through my Blogger profile.

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    1. Always forward. Thank you Griffis.

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