Sarcoidosis: Once Rare Disease Affects Black Women More

Sheron Williams

Sheron Williams was 27 years old, attending college full-time, in a theatre production and working two jobs on campus when she was first diagnosed.

“I would have mystery illnesses and I would simply push through it,” Williams says. “I just thought I was running myself down.”

Twenty-five years ago, Williams found out it was more than that. On that day, she was told that her watering eyes, vision problems, leg swelling, fatigue and rashes were actually due to a disease called sarcoidosis.

A disease with no known cause

Sarcoidosis is a disease of unknown origin that causes the immune system to overreact, leading to lung damage, skin rashes and other organ damage. This once rare disease now affects 200,000 people in the United States.

“The cause or causes of sarcoidosis are not clear, but most experts agree that sarcoidosis is caused by an environmental exposure, most often transmitted to the lungs,” explains Dr. Elliott D. Crouser, a lung specialist with The Ohio State University Wexner Medical Center who treats sarcoidosis, and a spokesperson for the Foundation for Sarcoidosis Research.

He adds that, in sarcoidosis, this exposure causes clusters of immune cells, called granulomas, to form in the lungs or other organs. Symptoms can also come and go on its own, without treatment.

Sarcoidosis affects Black women disproportionately, with studies like the Black Women’s Health Study confirming this finding and highlighting the need to address health disparities in sarcoidosis. It is not well understood why African-American women are more affected.