“It is clear that much more research needs to be done to understand sarcoidosis in Black women,” says Crouser.
The disease also affects women more than men, and people between the ages of 20 and 50 years of age more than other age groups.
Black Americans also have a more severe disease presentation, says Crouser. In Williams’ case, her symptoms progressed in just under a year to where she couldn’t swallow liquids or her own saliva, and her voice became affected.
“The doctors came in and begin saying that the sarcoidosis was traveling through my body,” she recalls. Then, she got the news: sarcoidosis was in her spine, causing the new symptoms.
She spent three weeks in the hospital then, ultimately going home with a feeding tube, until she could eat food again.
Tough to pinpoint
Some cases of sarcoidosis can be very difficult to diagnose because the symptoms can mimic a lot of other diseases. Williams says she had symptoms for years before her actual diagnosis.
“I will admit, I thought I must be crazy, because they couldn’t find anything,” says Williams. “I would later find out it takes an average of five to seven years for a person [with sarcoidosis] to be diagnosed.”