A PHriend shares her journey to becoming a patient advocate

Managing pulmonary hypertension (PH) for 20 years has not only shaped my life, but it’s also allowed me to connect deeply with a resilient and inspiring community. Over the years, I’ve witnessed firsthand the strength of patients and caregivers who come together to support one another, champion awareness, and advocate for better resources and treatment options. This shared passion fuels my advocacy work and drives me to continue highlighting the voices within our community.

Today, I’m excited to introduce Jolie Lizana, a “PHriend” (friend with PH) and the newest columnist for Pulmonary Hypertension News. Jolie is committed to advocating for both the PH and broader rare disease communities. She shared the following insights with me via email and phone conversations.

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Welcome, Jolie!

Jolie Lizana, right, visits with Mason Greenwald, legislative aide to Rep. Clay Higgins of Louisiana, last month. (Courtesy of Jolie Lizana)

Jolie’s path to advocacy began with a simple yet profound mission: to talk about PH with anyone who would listen. “A year or so after my PH diagnosis, I started sharing information and giving speeches,” Jolie said. What started as small efforts soon grew into a tireless pursuit of support and change for those living with PH. “The idea that I am making a difference, no matter how small, is what pushes me forward,” she said.

She recently took her fight for the PH and rare disease communities to the nation’s capital. “Going to D.C. was a wonderful experience,” she reflected. “I spoke with several members of Congress and their staff about the Supplemental Oxygen Access Reform (SOAR) Act.”

Jolie passionately described to policymakers the critical difference between merely being alive and truly living, emphasizing how access to liquid supplemental oxygen could dramatically improve lives. She also advocated for protecting Medicaid, a lifeline for many in the rare disease community.

“The energy in the air was incredible,” she said. “It’s great to see firsthand how the power of our stories can change laws and medical reform.”

The Rare Flag Project

This year Jolie launched the Rare Flag Project, an initiative that holds personal significance for her. “The Rare Flag Project spun off from ideas and conversations I had regarding the need for those in the rare disease community, individuals with chronic, invisible illnesses, to be recognized and acknowledged by others,” she explained.

The first Rare Flag Project display, held last month on Capitol Hill, marked a significant step toward increased visibility. Flags could represent people or, by September, various advocacy efforts, such as fights against cuts in Medicaid benefits and the budget of the National Institutes of Health.

Although delays in permitting meant only 20 flags were displayed, Jolie found both humor and significance in the moment. “We had a huge area, about half a football field in size, and only 20 flags. I truly hope the next display will be better!” She hopes to host additional displays in July and September.

What makes this initiative so powerful is its ability to connect people with rare diseases through a shared sense of recognition. “These personalized flags give us a place to put our name and our illness so others can notice us as we are,” Jolie said. Reflecting on her flag proudly displayed at home, she acknowledged, “I didn’t expect to feel the way I do every time I look at it, but it’s empowering.”

The first Rare Flag Project flags were displayed in front of the U.S. Capitol last month. (Courtesy of Jolie Lizana)

For Jolie, the most rewarding aspect of the Rare Flag Project has been the personal connections she’s made. “Meeting new people with various conditions who also want to be seen and heard hits me deeply. I feel fortunate to help others in the rare disease community, with invisible illnesses and chronic conditions,” she said.

What about those who want to share their voices?

When I asked for her advice on speaking out as an advocate, her response was simple: “Learn all you can about your condition and how it affects your body,” she advised. Armed with knowledge, patients can discuss changes with their doctors and take a proactive approach to their health.

Beyond self-management, Jolie believes in the impact of storytelling. “Your story can change another person’s life. Share it, advocate, and support others,” she said.

Jolie’s advocacy work and passion highlight the resilience and strength of the PH community. I’m grateful that she’s joined us at Pulmonary Hypertension News. Keep an eye out for the debut of her column, “The PHlip-side,” this Friday, July 11.

Jolie’s story reminds us that even small actions can lead to meaningful change. Together, our community is stronger and able to advocate more effectively.

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.