The PHlip-side – a Column by Jolie Lizana

Jolie Lizana is a Louisiana woman with a strong sense of hospitality and humor. She was diagnosed 12 years ago with systemic sclerosis, pulmonary hypertension, and heart failure. Jolie advocates for invisible, chronic, and rare diseases, and she is a certified legislative advocate. Her perspective as a former sonographer and EMT breaks barriers between doctors and patients. Jolie volunteers with nonprofits and hosts awareness events. Jolie hopes to bring raw truth and vulnerability to her column.

A PH advocate finds hope in new research, anxiety at the airport

As someone living with pulmonary hypertension (PH), I am dedicated to advocating for the needs of the rare disease community. My advocacy efforts span various platforms: patients, healthcare professionals, and the broader public. My work includes continuing my education and collecting resources for everyone in the rare disease community.

Sticky bras are good for the heart

Pulmonary hypertension (PH) can feel like a hand is squeezing my lungs, and my arteries are tentacles of fire. Sometimes I feel like a large iron block is sitting atop my heart, squashing it and causing heart failure. The pressure can get intense. This disabled heart of mine is…