In 1997, after several months of dealing with confusing symptoms, I was diagnosed with sarcoidosis in my lungs and lymph nodes. The surgeon who completed the biopsy suggested I not bother to research the disease, as it would scare me. On my way home from the hospital, I stopped at the library to start learning about sarcoidosis. All these years later, I’m still learning.
I dealt with active sarcoidosis that included additional organs and multiple medications for several years before it went into remission sometime around 2012. I was feeling good; I thought I was over it. Late in 2022, a routine follow-up pulmonary CT scan revealed new sarcoidosis activity in my lungs. I was very disappointed.
My life changed over the years. By 2022, I was an empty-nester, and my husband and I were both retired. I had more time on my hands and wanted to take my sarcoidosis learning in a different direction. I knew plenty about the disease, but now I wanted to meet other patients who have it. After all the years I have had the disease, I had never met anyone with sarcoidosis. I wanted that to change.
Utilizing the Foundation for Sarcoidosis Research website, I signed up to be the Community Group Leader for the FSR Global Sarcoidosis Clinic Alliance (FSR-GSCA) Founding Member University of Minnesota. My main goal for taking the leadership role was to meet other patients.
With tremendous encouragement and support from Katie Ferguson, RN, and Nicole Landon, RN at the University, we launched our virtual support group in December of 2023. We’ve been meeting monthly since then, featuring a variety of speakers while continuing to grow patient participation. We recently had our first face-to-face meeting where many of us were delighted with the opportunity to meet each other in person.
I knew from the start that trying to find patients that have a rare disease was going to be challenging. I understood that I had to find more sarcoidosis patients than those that are treated at the University of Minnesota. I printed flyers to hand out to my personal physicians that are in a different large health care system. Everybody I was involved with in my personal Pulmonary Rehabilitation program knew about the new group. I did some public speaking in another health system to introduce myself and the group. All of the professional staff I encountered were very supportive and recognized the value of helping me locate sarcoidosis patients. Everyone seemed to recognize the value of connecting patients.
The group is nearing completion of its second year. Connections and friendships have been made, accomplishing my original goal. It is now time for me to transfer the group to new leadership at the end of 2025, so I invite others to raise their hand to lead this amazing group. I look forward to seeing the group move forward while it continues to prosper and grow.
We’re a rare type with a rare disease…but we don’t need to walk this path alone.
By Jean Holewa
Learn more about FSR-GSCA Community Groups here or FSR volunteer opportunities here.