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.
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.
