FSR Campaign Elevates Awareness During Black History Month
Part of the banner for the African American Women and Sarcoidosis Campaign. (Courtesy of Foundation for Sarcoidosis Research)
In late 2012, Rhonda Underhill started having headaches and extreme fatigue. She attributed it to the long hours she was working as a general manager for a small business in Maryland.
Rhonda Underhill (Courtesy of The Foundation for Sarcoidosis Research)
After rounds of MRIs, misdiagnoses, and hospital stays — including doctors telling her she might die — a neurosurgeon evaluated Underhill and determined she had neurosarcoidosis (granulomas in her nervous system) and hydrocephalus (water buildup in her brain). That same surgeon would go on to save her life and prevent lifelong physical disability.
But before that, as she was trying to navigate the healthcare system and stay alive, she was laid off from her job and lost her insurance. Caught completely off guard, she didn’t know what to do.
The Foundation for Sarcoidosis Research’s (FSR) Ignore No More: African American Women & Sarcoidosis National Campaign aims to prevent situations like this from happening to women like Underhill as part of its effort to raise awareness about disease severity in Black women. The campaign has kicked into high gear during Black History Month.
African American women are nearly three times more likely to develop sarcoidosis as Caucasian women, 13 times more likely to be hospitalized because of it, and 10 times more likely to die from the disease, according to FSR. An inflammatory disease, sarcoidosis is caused by an overactive immune system.
“My messaging now is, ‘Hey, ladies, please listen to your body,’” said Underhill, 44, one of the patients tapped to help shape the campaign and share personal stories. “If something is going on, please pay attention. And don’t just settle for the first answer someone gives you,” she said in a phone interview with Sarcoidosis News.
That’s the same message Underhill tried to get across in a November webinar, “Black & Rare: Sarcoidosis in Black Women,” and it’s what FSR hopes to stress in February with its social media campaign and informational webinar.
Mary McGowan is the CEO of The Foundation for Sarcoidosis Research. (Courtesy of The Foundation for Sarcoidosis Research)
FSR’s CEO Mary McGowan plans to continue this campaign into the next couple of years with a focus on clinical trial engagement and patient enrollment. The bulk of events and the efforts to increase awareness about this issue intentionally coincide with Black History Month and American Heart Month, as sarcoidosis can affect all organs, including the heart.
McGowan says she was quickly made aware of the issue facing this patient community when she became FSR’s first CEO in 2020.
“I heard story after story from African American women whose symptoms were ignored,” McGowan told Sarcoidosis News. “They were left untreated, not taken seriously, and … living with very complex and debilitating forms of sarcoidosis.”
She and her team decided that creating a national campaign was the best step forward. McGowan is hopeful the FSR will “sound the alarm” about how the disease disproportionately affects Black women.
That’s a goal also shared by Ogugua Obi, MD, an assistant professor at East Carolina University and pulmonary specialist for sarcoidosis, who stressed the importance of the campaign’s slogan, “Ignore No More.” Obi sits on the four-person Women of Color Clinical Advisory Committee.
“I think it’s time to stop ignoring this disease. That’s number one. Number two, I think it’s time to stop ignoring the inequities of care that affect predominantly African American women that have this disease,” Obi said in a video interview with Sarcoidosis News. “Number three, I also think that it is time for African American women and disadvantaged members of society to speak up. I don’t think we can continue to live in a world where, not only do we accept being ignored, we keep quiet and we do nothing about it.”
Part of the reason why African American women face greater health disparities in sarcoidosis is they tend to occupy lower socioeconomic levels, Obi said. That’s paired with some racial barriers, including mistrust of the health system. A study that included five focus groups with low to high median income levels found that racial and socioeconomic inequities more frequently affected low-income people.
FSR has enlisted the help of 22 partners, including Sarcoidosis News, to bring greater awareness to the disease in this community. On Oct. 25, it held a Twitter chat that was viewed 22,000 times, according to the foundation’s website.
The organization also is focused on social media events throughout February and plans to make two to three posts per week to share information and personal stories from African American women with sarcoidosis. Its partners also will post throughout the month under the theme, “Ask, Engage, Connect.” A video produced by FSR will be released on social media Friday.
Celebrities also will help spread the word. Jeryl Prescott Gallien, an actor who has appeared in “The Walking Dead” and the DC universe show “Swamp Thing,” and who has been living with ocular and pulmonary sarcoidosis for 17 years, will share her story online.
Educating the public, not just African Americans or women, about sarcoidosis is important, too, McGowan said. It can start individually — a conversation in a book club, at church, or during a Zoom get-together with family or friends.
“Just talk about it,” McGowan said. “It’s all about having the conversation and making sure that others are keenly aware of this.”
On Feb. 16, FSR will host an educational webinar called “Ignore No More: Sarcoidosis, The Rare Disease African American Women Need to Know.” The event will feature members of its clinical and patient advisory committee, including Underhill and Obi. The discussion will focus on the underlying mechanisms of the disease and give viewers tools to better engage with their doctors. If interested, register here.
Underhill said she felt alone when she received her diagnosis. She wished she could have known more African American women who shared her condition. If FSR and the campaign had been around nearly 10 years ago, dealing with her diagnosis might have been easier. Now, through FSR, Underhill has connected with another woman with the same double diagnosis — neurosarcoidosis and hydrocephalus.
“By meeting other people who had the same condition as me, it was just another source of comfort, because I was going through so much,” Underhill said.
Guiding other sarcoidosis patients through their diagnoses is also why Underhill applied to be part of the patient advisory committee. She was one of 15 selected from a pool of 71 applicants, according to McGowan.
“The most rewarding part is knowing that my story is inspiring others to live, and to care for others who had this illness, and also for the medical professionals who are part of FSR,” she said.
“Reminding them that their sacrifices aren’t in vain.”
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