PHA's guest blogger this week is Debbie Drell (nee Castro). As a long-time PHA staffer and caregiver, Debbie has spent many years building the PH community through her work with PHA's support group network. Lately, she has been looking at the PH community through another lens.
This month, I’m celebrating my 12-year anniversary of working at the Pulmonary Hypertension Association. I am currently the Senior Director of Volunteer Services and my team (Andrew Hicks and Michael Knaapen) works directly with the 245 support groups in the United States and Puerto Rico. Not a day goes by that I don’t thank my lucky stars that I am a part of this team based in the Washington, D.C., area, doing such amazing work for medical professionals, patients and caregivers in this field of PH.
To celebrate my anniversary, the organization decided to let me “guest post” for
PHA’s Facebook page. On June 20, I started working with our Communications team to look at what we’re posting, how frequently we post and WHY we post. What I wanted to do was incorporate more patient faces, voices, perspectives, quotes and testimonials. The community has responded overwhelmingly with comments, likes, shares and positive feedback. We gained hundreds of likes in the last two weeks and had a huge surge in “engagement,” which means people commenting and interacting on the page.
We post a lot about the educational and support resources we provide; we post about advocacy and event opportunities for getting involved. What I added was another element: I saw news in related disease conditions and updates on disability issues in general and put a PH twist to them:
This post was pretty well received. It may very well be the most engaging post we’ve ever put on our Facebook. With 431 shares and nearly 300 “likes” – this message was really proliferated in the community. People shared it and added their stories of being unfairly harassed when parking at handicap spots. Since my sister was diagnosed with PH 17 years ago, she’s experienced the “invisible” nature of the disease, and I’ve been there to see it firsthand. When I saw others posting about the 25th Anniversary of the
Americans with Disabilities Act, I just had a gut feeling that we needed to connect the PH community in our own special way to this larger disability community news. We are rare and misunderstood in the public, but we can come together in understanding of the disease. We can raise awareness and fight against the invisible nature of this disease.
I wanted to share the story of hope from a young girl who created a major awareness-raising video explaining what she goes through with PH. PHA showed this video at our Congressional Luncheon last November, and when I saw that it was this girl’s birthday, I decided to showcase her work and post this video with a note that she is celebrating 12 years on this earth when doctors told her she wouldn’t live to see her 1st birthday. Some people are so brave, and with what energy they have, they put so much work and good into the universe on behalf of the community. She is an inspiration, and people really appreciated her story and her work with this video.
One woman wrote:
Eliana, lots of people can do things you can't do ... but few can do what you CAN do. It takes a lot of strength to do sports, or run marathons. You move mountains with your little finger!
I’ve also tried really hard to respond to each and every comment and posting on the page. This is time-consuming (but really fun!), and it is so rewarding to read the feedback and hear people sharing their challenges and experiences with PH. We try our best to connect with everyone who posts on our wall. It’s really exciting how people start talking to each other about their experiences with everything from clinical trials to disability parking to being diagnosed to pulmonary rehabilitation to blood clots related PH!
We put out
a press release about Heart Camp for Kids, and the response to this has been incredible. So many parents and adults are grateful for Dr. Hanna’s group and their ability to put this together so our kids can feel like anybody else.
We’re making sure our page showcases the faces and voices of the PH community, including this lovely lady who was diagnosed with pulmonary fibrosis and PH. Her story was in
Pathlight, and we edited her photo to include her inspiring words. Some of the comments on this thread made me cry with happiness (genuinely touching words from the community).
But don’t worry! We are still posting free medical education content for patients – and people are sharing their stories on these posts, too. We posted about a joint American Thoracic Society and PHA Patient Education Seminar recording that included new therapies on the horizon and clinical trials. People from around the world talked about their experiences in clinical trials and how they’re doing now. They breathed life and real experiences with the subject in a way that makes it easy to see how important these resources are for patients.
I just want to say that I am honored to be able to provide a new perspective on PHA’s Facebook page and to encourage the voices of the community into our posts. It is a great privilege to connect with so many good people at various stages of their diagnosis. One person connected with us after being diagnosed days before; another was diagnosed 20 years ago and was sharing with us for the first time. In each of these interactions, I realize just how important it is to bring patients together. Creating the community of hope that is PHA was the motivation for the founders, and even on our Facebook page, we continue to see the power of patients coming together, interacting and sharing their stories.
Thank you to the thousands of people who shared our posts these last two weeks, including (but not limited to) these U.S. and international organizations, institutions and grassroots community groups:
And all the support groups who shared:
Don't forget to invite your friends to
PHA's Facebook page to join the conversation. Thanks for getting us to 14,000 likes!
