This guest post was written by Gretchen Jordan, a volunteer with the Minnesota Rare Disease Advisory Council Patient Advocacy Group Committee. Rare Disease Day is February 28, 2026. This post has been lightly edited.
My name is Gretchen Jordan. I am a rare disease patient, advocate, volunteer, and nonprofit leader. It is an honor to share my story with you on Rare Disease Day.
I was diagnosed with Cushing’s disease in 2020, at the height of the COVID-19 pandemic. Cushing’s is caused by a hormone-producing tumor on the brain’s pituitary gland. It floods the body with cortisol, the stress hormone. Imagine living in “fight or flight” mode 24 hours a day, seven days a week.
That constant surge of cortisol slowly harms the body, organ by organ, system by system. Untreated, it can be deadly.
Like many rare disease patients, my diagnosis came only after years of delays, misdirection, unnecessary treatments, endless copays, and maxed-out out-of-pocket costs. By the time we found the tumor, my symptoms had become impossible to ignore and impossible to manage. I made the heartbreaking decision to leave my career as a national software sales director because the travel and demands were no longer sustainable.
Cushing’s is not on Social Security’s disability listing. There was no safety net. No financial support.
Still, the diagnosis felt like validation. A brain tumor meant answers. It meant a path forward.
Surgery was successful. The tumor was removed. But the story did not end there. Years of cortisol damage left me with ongoing mental, physical, and autoimmune complications that I will manage for the rest of my life. And at every annual scan, I am reminded that my risk of recurrence is as high as 50%.
Living with that uncertainty changed me.
It also mobilized me.
I became determined to improve the experience for patients diagnosed after me. Today, I serve as chair of the Community Engagement and Patient Advocacy Committee for the National Biorepository and Resource for Pituitary Neuroendocrine Tumor Translational Research (BioPitNeT), a $14 million NIH-funded initiative through the University of Georgia School of Medicine that studies pituitary tumors.
I have filed the paperwork to establish a Minnesota-based 501(c)(3) organization focused on advancing translational research and educating pharmaceutical leaders, researchers, clinicians, and payers about what it truly means to center the patient voice from bench to bedside, and back again.
I volunteer in the rare disease community, and like many rare disease patients, I hold another unpaid, part-time job: managing my own medical care.
When I look back, I can see how my professional background prepared me for this fight. I had the skills. I had resilience. But strength alone is never enough.
I would not be here without the unwavering support of my husband, Luke. Without faith and hope. And without daily cuddles from the neighborhood dogs who remind me to stay present.
Rare disease can be isolating. It can feel invisible.
But when I stood in front of the I-35W bridge lit up for Rare Disease Day, I was reminded of something powerful:
We are not rare alone.
We are a community.
And together, we are impossible to ignore.