Building a Movement, One Support Group Meeting at a Time

Puerto Rico's first meeting

December 8, 2009

By Debbie Castro
PHA Director of Volunteer Services

A patient originally from Puerto Rico but now living in Texas attended PHA’s 8th International PH Conference in Houston and noticed that there was no support group or organization for residents of Puerto Rico. Although Evelyn Crespo lives in Texas, she travels frequently to Puerto Rico and contacted PHA almost immediately after Conference to determine what steps she should take to organize a group there.

Since that time, two groups have formed for Puerto Rico. One is headed by patient leader Mineliz Colon and her doctor, Dr. Héctor Stella-Estevez. This group — known as the Caparra Wellness Center PAH Support Group — has already held two meetings for patients in the area. A second group for patients is led by Evelyn along with patient Luz Batista-Santiago, Luz’s caregiver and husband Ricardo, and their PH-treating doctor, Dr. Alvaro Aranda, from the region’s Auxilio Mutuo Hospital. Thanks to the people fueling this new pulmonary hypertension community, Puerto Rico now has its first PH Center for the comprehensive treatment of patients, scheduled to open in January 2010.

Not only does the Puerto Rican PH community work together to organize patient meetings, but it is already raising awareness, advocating for PH inclusion in Puerto Rico’s healthcare insurance, and securing official government proclamations declaring November as PH Awareness Month.

One of the largest efforts during Awareness Month was a rally and exhibit at the Plaza Las Americas, the biggest shopping center in the Caribbean. For 12 hours on October 31 and six hours on November 1, the support group led by Evelyn, Ricardo and others set up a booth to draw attention to the disease for the approximately 60,000 people who walk through the Plaza daily. Ricardo and Luz prepared special shirts, brochures and banners to draw even more attention in this high traffic shopping area.

This group also uses Facebook to organize its patients, and as we go to press, this online group boasts 161 members with postings and photos listed frequently. Group co-leader Luz won the global competition for the PHA United Kingdom’s “Blue Lips of PH,” which has generated attention for her story and the growing movement of patients in Puerto Rico.

PHA boasts a network of more than 216 support groups, but we still need to expand into areas that don’t have groups and in areas where patients must travel a distance to find other patients. What does it take to go from Evelyn’s observation that “there are no groups here” to this now vibrant and growing network? For ideas and support, contact PHA’s Director of Volunteer Services, Debbie Castro, at 301-565-3004 x755 or Debbie@PHAssociation.org — it can be done and we can help you!

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

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.