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.
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…
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Heart disease is the leading cause of death for women in the United States. As pulmonary hypertension (PH) progresses, patients may experience heart failure, a form of heart disease in which the…
Those of us in rare disease communities have learned one lesson particularly well: We all must listen to our bodies. That’s why a celebration like National Relaxation Day — which happens to be…
My body allows me to do many things on some days, and not much on others. Because I never know which days will be fair to partly cloudy, making it to appointments and keeping…
Philosopher George Santayana famously said, “Those who cannot remember the past are condemned to repeat it.” This means that if we don’t learn from our mistakes and the mistakes of others, we may continue to…
We all want to feel a sense of belonging and connection. The tricky part is learning that we can’t force a genuine connection; it has to find us. Real human connection comes with shared…
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