I Have Sarcoidosis, But it Doesn’t Have Me

Regina Gordon was diagnosed in 1994 with sarcoidosis, an inflammatory autoimmune disease that is for the most part, invisible. For the first 22 years of her diagnosis, Ms. Gordon had to learn to navigate the medical system on her own, her reports and needs frequently dismissed and not understood by the medical community. This forced her to listen to her own body and become her own, empowered advocate.

It is often overlooked how a chronic illness impacts the whole family. Ms. Gordon’s mother, children and grandchildren are integral to her care and foremost in her mind as she works hard to keep herself as healthy as possible and continues her education - something she has never abandoned despite her illness. (She’s on her second master’s degree!)

And now she is an advocate for others - a ‘purple snowflake’ in the sarcoidosis world. She started Sarcoidosis Fort Wayne Support Group, is an Indiana Ambassador for the Foundation for Sarcoidosis Research, and a patient advocate for Rare Across America.

Her willingness to talk openly about her sarcoidosis journey will open hearts, minds and eyes to the truth of living with chronic illness.