TV’s ‘Behind the Mystery’ Features Journey of Sarcoidosis Patient

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by Patricia Inácio, PhD |

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A recent episode of TV’s “Behind the Mystery” shared the journey of a sarcoidosis patient from diagnosis to treatment as a way to raise awareness of the emotional and medical challenges of living with this complex condition.

The episode, shown on Lifetime on Dec. 6 and again Dec. 14, is now available on YouTube. It features Cheryl Bradford, an African American patient and sarcoidosis advocate who is also a member of the Foundation for Sarcoidosis Research (FSR)’s Women of Color Patient Advisory Committee.

That committee was formed to create the foundation’s recent African American Women & Sarcoidosis National Campaign, which aims to show how African Americans are disproportionately affected by the disease and to educate people living with it.

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In the U.S., sarcoidosis disease affects African Americans more than any other group. People in this group not only are more likely to develop the condition, but they also experience more severe symptoms.

“Raising awareness is a critical first step to creating better treatments and a possible cure for this devastating disease which impacts African American women like our patient advocate, Cheryl, at three times a higher rate than her Caucasian counterpart,” Mary McGowan, CEO of FSR, said in a press release.

Sponsored by Xentria, “Behind the Mystery” is a special segment of “The Balancing Act” that is dedicated to pinpoint the challenges of living with a rare medical disease and to change how it is managed and treated.

The recent episode followed the healthcare journey of Bradford, who spent nearly two decades searching for a team of doctors who could help manage her disease.

“Once I got [my diagnosis] I went to see a pulmonologist, and I told them, ‘I’m in pain, I have shortness of breath, and I just don’t fell well,'” Bradford said in the episode. “I was just told that everything was in my head … [and] wasn’t even given any medication.”

Over the next few years, her symptoms worsened, and Bradford tried countless medications that ultimately didn’t work because doctors failed to link her symptoms to sarcoidosis. “I felt depressed. I was just so tired and fatigued, I didn’t want to do anything,” she said.

The episode also featured Peter Sporn, MD, the director of the Northwestern Sarcoidosis Center of Excellence and a physician who specializes in sarcoidosis. He shared his insights for improving the management of the disease.

“It’s very very important for sarcoidosis healthcare providers to recognize the multiple ways in which sarcoidosis can affect patients and to address all of these many manifestations with treatment,” he said. “Physicians and other healthcare providers who work with sarcoidosis patients [should] develop a partnership and … work together to control the manifestations of chronic illness.”

Eventually, Bradford found her “dream team,” which included a cardiologist, a pain-management doctor, an infectious disease doctor, and a pulmonologist. She is now receiving steroids and other medications that manage the symptoms of sarcoidosis and treatment side effects.

Yet Sporn said that better treatments are needed. “What we really need in sarcoidosis is new therapies that more specifically get at the causal pathways of the disease, that are associated with fewer side effects, that are more effective, and ultimately that can interrupt the disease and stop its progression.”