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 Aug. 15, the day this column was published — is such an apt reminder. Many will…
The PHlip-side — 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.
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I recently went to Washington, D.C., as part of the Pulmonary Hypertension Association’s (PHA) Capitol Hill Day to advocate for the pulmonary hypertension (PH) community and help secure co-sponsorship of the Supplemental Oxygen Access Reform Act (SOAR) and the Safe Step Act. The SOAR Act seeks to reform…
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 plans with friends is like hitting a bull’s-eye on a dartboard while wearing a blindfold. I…
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 make poor choices. But if we use our failures as opportunities for growth, we claim victory…
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 dreams or experiences and is often filled with intense emotions. I didn’t find a sense of…
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