More than 70 members of the pulmonary hypertension (PH) community gathered Sept. 17 in Louisville, Kentucky, for PHA On the Road. The free, daylong workshop provided patients, caregivers, family members, health care professionals and industry sponsors with timely information about living with and managing pulmonary hypertension (PH).

After opening remarks by co-chairs J. Wesley McConnell, M.D., and Kimberly Jackson, B.S.N., R.N., attendees learned the basics of PH during a “PH 101” presentation given by Christina Berringer, M.S.N., APRN, FNP- BC, AGACNP-BC. The presentation provided an overview of PH diagnosis and treatment, including common symptoms and diagnostics tests. The session also covered the experience of receiving a PH diagnosis and choosing appropriate treatments and therapies for each situation.

“Education is the key to empowering [patients] to take control of their care needs,” Kimberly said. “It is essential that our patients be advocates for their health.”

The workshop also featured two rounds of breakout sessions. Breakout session topics ranged from balancing sodium and fluid intake to communicating with emergency care providers.

Asking the experts
At the networking lunch, patients and families had the opportunity to ask medical professionals questions. The panel, featuring from breakout sessions, provided insight on self-advocating for new medications, identifying financial resources to pay for medications, the importance of participating in clinical trials, and more.

Afterward, patients Denise Clark and Evelyn Mitchell shared their stories. Both discussed their experiences with being diagnosed, finding the right therapies and treatments, and living with PH.

Looking to the future
After attending a support group, or taking a break, attendees returned to the ballroom for the closing session on PH research. Hosted by Dr. McConnell, the session covered PH registries and their significance.

At the end of the session, Kenny Ott, an attendee, won a pair of registrations to PHA 2024 International PH Conference and Scientific Sessions in Indianapolis.

“[Attending PHA On the Road] gives you a sense of knowing that PH isn’t as rare as you think it is. There are people out there with the same condition as you or your family member,” said Kelly Weigle, parent of a child with PH and panelist at PHA On the Road Louisville.