Bonnie Patricelli leads the Pulmonary Hypertension Association (PHA) South Jersey Support Group with Nancy Zeppa. Bonnie, who lives in Clementon, New Jersey, with her husband, Dominick, has been involved with the support group since 2008. Their son, Ryan Juntti, died in 2015 of pulmonary hypertension (PH). Bonnie shared her story for the fall issue of Pathlight, PHA’s quarterly member magazine.
By Bonnie Patricelli
My PH story began in summer 2007 when my son Ryan was diagnosed with idiopathic pulmonary arterial hypertension. He was 27 and living in South Carolina. That fall, he moved in with me and his stepfather and remained with us until his passing.
Ryan and I began attending the Penn Presbyterian Support Group in Philadelphia where his nurse practitioner, Chris Archer-Chicko, led a support group. The members encouraged us to go to our first PHA International PH Conference and Scientific Sessions in 2008 in Dallas. At PHA 2008, we attended a session on PHA support groups and decided to restart what had been the South Jersey Support Group when we returned.
We were co-leaders from 2008-2015. After Ryan’s passing, I wanted to honor him and continue to support our friends in the group. I also wanted to share knowledge I’ve gained to help others, which makes me happy. I don’t want anyone to be on this journey alone.
Support group benefits
Starting a PHA support group is a great way to meet and support other PH community members whether patients, caregivers or health care professionals. PHA provides tons of support for its support groups and leaders. Whoever comes to a meeting is glad you’re there, and they often need someone to share with, whether there are two people or 15. You will learn from each other.
Before the COVID-19 pandemic, our support group met five times a year. We met at the Chews Landing Fire Hall where my husband is a volunteer fireman. Since the pandemic began, we meet virtually every month. We are considering starting a mix of in-person and virtual meetings. Several of our group members can’t physically get to the meetings, and they like the virtual opportunity.
In addition to the support group, I stay involved in the PH community in other ways. Raising funds every year for the O₂breathe Philly Walk and spreading PH awareness is something I enjoy. The money raised goes toward much-needed research and help for patients.
In past years, Ryan and I received Lantos Grants to create Hot Holders and restaurant placemats, which PHA distributed throughout the country to spread PH awareness.
I also enjoy setting up PH awareness tables at community fairs. Spreading awareness is something I am proud of and dedicated to. The earlier the diagnosis, the better.
I am most inspired by the PH warriors who, even with their own struggles, are so open and willing to help others. So many are actively involved in volunteering not only with PHA but also in their communities. With my own recent diagnosis of Parkinson’s, I have received overflowing encouragement from my PH friends. It keeps me going.
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