How the PHA’s biennial conference helped me find my community
The gatherings became a treasured part of this columnist's health journey
In 2002, three years after my pulmonary hypertension (PH) diagnosis, my family and I made our way to the Pulmonary Hypertension Association’s (PHA) International PH Conference. I have no memories of this gathering, which was the first we’d attended, but it soon became a treasured part of my health journey.
The PHA’s biennial conference — held this month in Indianapolis — offers a place for patients, caregivers, and healthcare providers to come together and connect. While cities across the U.S. have hosted, it draws people from around the world. Because PH is such a rare illness, the need for an intentional gathering is clear. During my 19-year journey with the disease, we attended conferences in Florida, Texas, and more.
The range of content has always been impressive. There have been scientific panels, peer support, networking opportunities, and even a fashion show where patients could display how they styled their IV pumps. There’s always been something for everyone.
To me, the conferences were like a quick weekend summer camp made just for PH survivors. Over the years, my sister and I made friends with people who became an important source of support throughout my PH journey. Reuniting with them every other year was so special. Watching videos of the events makes me nostalsgic, as it’s clear we were having the time of our lives.
Clockwise from top left, Anna and friends Jake, Emily, and Camille and Anna’s sister, Maggie, attend a 2014 PHA conference in Indianapolis. (Courtesy of Anna Jeter)
Getting involved
After our first conference, my mom started getting involved in the kids’ room, helping to plan games and other activities for younger attendees. My dad joined PHA’s board for several years. In 2006, my parents, along with local PH doctors, helped host the conference in Minneapolis, near our hometown.
As a family, we remained active in various aspects of the PHA conferences. We continued attending until my impending heart-lung transplant began to take priority and travel felt too risky. I was somewhat fortunate that several of my friends and I entered our transplant journeys at the same time. While the procedure was a bittersweet truth of the illness that connected us, I was comforted to know the change was taking place for many of us simultaneously. None of us felt alone.
My family and I haven’t attended any conferences since my transplant in 2018, yet we fondly discuss them every time another one rolls around. I know there’ll always be space for me in the PH community if a feasible opportunity for me to attend presents itself. I’d love the chance to speak on a panel about the transition to life after transplant following a life with PH.
Regardless, I’m so happy that the conference still exists more than 20 years after we first attended. The gatherings were a cherished part of an otherwise difficult journey for me, and I’m thankful for everything they gave me.
If you’re a PH patient and haven’t attended one yet, keep your eyes out for the Dallas meetup in 2026. It’s a phenomenal way for those of us in the PH community to foster the hope and connection we deserve.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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