Intermittent breaks — they’re what Antoinette Miles-Booker counted on to get from the basement to the first floor of her home. Gone were the days of walking a distance to grab lunch in Baltimore’s Inner Harbor with co-workers downtown.
Her health was declining. For months, she endured fatigue and weight loss, and her voice deepened. She’d wake up some nights and find her husband praying over her.
Then came the first outpatient procedure, a wire put into her nose and down her chest. Health professionals thought she had lymphoma, but a bone marrow biopsy revealed an elusive culprit: sarcoidosis.
“That was the worst thing that I think I have ever gone through health-wise,” Miles-Booker said.
Sarcoidosis is a rare disease characterized by the growth of inflammatory cells called granulomas that appear in one or more organs. It most commonly affects the lungs. Miles-Booker never heard of the disease before her diagnosis. She joined the 150,000 to 200,000 people in the U.S. who have been diagnosed, including the late comedian and actor Bernie Mac, and actress Jeryl Prescott Gallien, who has been vocal about combating the disease.
Sarcoidosis disproportionately affects African American women. They’re more likely to have severe cases of the disease and higher hospitalization and mortality rates. The disparity has heightened efforts by survivors, nonprofits and medical professionals to increase research and educate — and to provide support and share real-life testimonials about navigating the complexities of sarcoidosis.
According to the Foundation for Sarcoidosis Research, African American women are twice as likely to be hospitalized from the disease as African American men, and 10 to 18 times more likely than Caucasians. African American women also have a mortality rate that’s 12 times higher than Caucasians and 1½ times higher than African American men.
The delay in Miles-Booker’s diagnosis is not uncommon. Sarcoidosis is difficult to detect, and it can present itself in a wide spectrum of ways. Though Miles-Booker has been in remission for at least five years, there isn’t a cure for sarcoidosis, and health professionals are unsure about what causes it. Research is necessary to delve deeper.
The Foundation for Sarcoidosis Research is an international nonprofit leading efforts to find a cure. Since 2000, it has raised over $5 million for sarcoidosis-specific research.
“We believe that education and awareness can help bring about dialogue between patients and clinicians about rare diseases and specifically about sarcoidosis,” foundation CEO Mary McGowan said.
The nonprofit launched a campaign called Ignore No More: African American Women and Sarcoidosis, urging the demographic to ask about the symptoms, engage in treatment and connect with their communities. With partnered efforts of patients and providers, the campaign hopes to establish a better understanding of the disparities, and to improve health outcomes, diagnosis and treatment for African American women.
“I knew immediately that I wanted to be a part of this, because there was such a huge void that needed to be filled and there didn’t seem like there was a place for us, for Black women to talk about their lives and navigating sarcoidosis,” Erica Courtenay-Mann said as a member of FSR’s Women of Color Patient Advisory Committee.
Barriers for African American women
Dr. Ogugua Obi said the prevalence of sarcoidosis in African American women highlights intersecting barriers: race, gender and socioeconomic. These barriers can influence whether a diagnosis is ever received, access to specialty care and being uninsured or under-insured.
Obi is an assistant professor of medicine and a pulmonary and critical care physician at the Brody School of Medicine at East Carolina University in Greenville, North Carolina. She also serves on FSR’s Women of Color Clinical Advisory Committee.
Implicit and explicit biases in the health industry are factors as well, Obi said, and they can result in a dismissal of symptoms and poor patient-provider communication.
African American women are also faced with the crippling strong Black women trope, which can invalidate their health needs at home and in society.
Allison Walker was a sergeant with the Detroit Police Department when she started getting nodules — growths of abnormal tissue — on her legs. They never went away and started to hurt, but the mother of two at the time continued working. Partial face paralysis, a fever and a loss of some of her eyesight slowed her down enough for her to seek medical help.
“As a Black female and a mother, we have to pay attention to our own bodies. Slow down from taking care of everyone else,” Walker said.
Walker was diagnosed with Heerfordt-Waldenström syndrome, a rare manifestation of sarcoidosis. It can present itself as a fever, facial paralysis, inflammation of part of the eye and enlarged parotid glands, which are the salivary glands in front of each ear. She went to doctor’s appointments while her kids were at school and limited whom she told because she didn’t want people to feel sorry for her.
That was almost 28 years ago and her sarcoidosis journey has been eventful. Small tasks still require a break. She has had to have cataracts removed, and she has bad brain fog from several falls over the years.
“Through it all, I’m still here. I don’t look like what I’ve been through,” Walker said.
In 2009, she and a friend started Caring Hands Sarcoidosis Foundation, a grassroots effort to provide a patient support system for people with the disease. Walker said the nonprofit — before the pandemic — held in-person sessions to talk and vent. It even raised funds for individuals struggling to afford basic necessities. The foundation, along with more empathy, is an outlet she wishes she had when she was first diagnosed.
Leaning into research
The next phase of the Ignore No More campaign will be clinical trials, McGowan said. Targeted research is necessary to find out why sarcoidosis cases are so staggering among African American women. In addition, research can help establish treatments that can provide a better quality of life. But getting participants may be a challenge.
“Historically, we’ve had a lot of mistrust in the system, and there are not too many people, especially in the African American community, who are eager, willing or able to become involved in research about the disease,” Obi said.
If you’d like to find out more about the Foundation for Sarcoidosis Research and its resources, visit stopsarcoidosis.org. Additional information about the Caring Hands Sarcoidosis Foundation — based in Michigan — can be found at sarcoidnetwork.org.
Jasmine Vaughn-Hall is a former culture reporter for the USA TODAY Network’s Atlantic Region How We Live team. Follow her on Facebook (@JasmineVaughnHall), Twitter (@jvaughn411), and Instagram (@jasminevaughnhall).