by Michael Knaapen, Director, Patient & Caregiver Programs
Support groups are a place for PH patients or their loved ones to meet one another at in-person meetings to find knowledge, encourage support, share hope and provide empowerment to all those affected by PH. There are nearly 300 support groups across the country, and at least one new group is added every month. You are not alone, and there’s a good chance there’s a group meeting near you.
New York City
On Saturday, April 22, 25 members of the PHA community gathered at Coogan’s Restaurant in uptown New York City for a workshop on fundraising and an update on PHA resources and programs. PHA staff members visited the group to speak about the upcoming O2 breathe Walk in New York on June 10, and outlined ways that they can get involved. Mitch Koppelman, a member of PHA’s Board of Trustees, whose wife has PH and whose two grown daughters passed away from PH, was the featured speaker at the meeting.
Barbara Wilson Thompson, leader of the Memphis PH Support Group, tried something new at her group’s March meeting. After getting written permission from all attendees, the meeting went Facebook Live! After filming and creating a video of the meeting, Barbara said, “I downloaded it, edited it a bit and added some still pictures. The visual isn’t very good due to lighting, but the audio was great. I learned I need some sort of tripod for my phone while filming and that I need to video in landscape mode. It was viewed by almost 400 people, so I would call that a success!”
During her initial visit with a pulmonologist, Kathleen Ford was encouraged to visit PHA’s website to find a support group. Imagine her disappointment when she found the closest group was 150 miles away! A couple of months later, she attended PHA on the Road and realized the importance of her doctor’s suggestion. “It was such a relief and comfort to know I wasn’t in this alone. I was so impressed with the support and encouragement I received that weekend that I knew I had to start a support group here in Key West,” Kathleen said. Since January, Kathleen has led monthly meetings for a small group of patients and caregivers on topics ranging from psychosocial coping to associated diseases.
This article first appeared in the Spring 2017 issue of Pathlight magazine. Become a member of PHA to receive this quarterly publication full of patient profiles, medical information and tips for living with pulmonary hypertension.