Gone Too Soon
First Annual Ciera Brookins Lupus Educational Foundation Fundraising Event Raises Awareness And Funds To Combat Disease That Disproportionately Harms Black Women
By Raoul Dennis // PHOTOGRAPHY BY FRANK SOLOMON
At age 15, Ciera Nicole Brookins joined an exclusive club dominated by African American women (and other women of color): she was diagnosed with lupus. She didn’t let it slow her down, though. She was a doer – active, popular and passionate about life.
Ed Brookins and his daughter, Ciera.
In fact, in 2016, while attending Morgan State University, the junior was having one of the most productive academic years of her life.
It was all the more shocking when she called her parents December 16 of that year saying that she was having trouble breathing. As such, she was making her way to the emergency room at MedStar Health Hospital. Ciera died that day before her family could get to the hospital. At age 26, she was gone that quickly.
The tragedy strikes lupus victims too often.
A Lupus Foundation of America funded study found that overall, lupus was among the top 20 leading causes of death in females ages 5-64. Among black and Hispanic women lupus ranked 5th in the 15-24 years, 6th in the 25-34 years, and 8th-9th in the 35-44 years age groups, after excluding the three common external injury causes of death from the analysis.
The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus. It is believed that between 10-15 percent of people with lupus will die prematurely due to complications of lupus. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span.
“She loved working with young people – especially children. She loved children. Her major was social work,” says her father Edgar Brookins, the well-known former general manager of the Washington Afro American Newspaper. “She was a leader like her dad,” he mused with a sparkle in his eye and a smile on his lips. “If she was in a group, she would raise her hand and say ‘I will lead this.’ She was the joy of my life. We had our little father-daughter conversation all the time. Most of the time, dad won out,” he laughs.
He says that his daughter fought for her life along with the doctors who tried to resuscitate her twice. She had gone through typical ups and downs with lupus and had been hospitalized for it in the past. “But we didn’t see anything this drastic coming,” he explains saying that young Ciera’s heart gave out by the third attempt.
Dedicated To Combating Lupus
Edgar Brookins now chairs the Ciera Brookins Lupus Educational Foundation. Its aims are to raise awareness and major funding for lupus research. In and 2017 and 2018, the group formed around the issue and held a popular awareness-raising event at Martins Crosswinds in Greenbelt. But this year, it became official as the foundation earned its 501-c3 status just days ahead of the Nov. 23 event.
Kionne Abdul-Malik
“I have dedicated my life to the legacy of my daughter and to help expose and create that awareness about lupus,” Brookins says.
Some 160 came out to attend the event (which raised over $1,200). Along with county and state VIPs, families and supporters of lupus survivors along with women living with lupus were in attendance. (click here to see additional photos)
Prince George’s County States Attorney Aisha N. Braveboy delivered a proclamation to Brookins and the foundation. Three lupus survivors told their stories of living with the disease (see video). Lillian Wilkinson Maynor, Kionne Abdul-Malik and Jacqueline M. Pressey each shared their experiences with Pressey offering a dramatic, artistic performance that illuminated her fight with lupus.
Lillian Wilkinson Maynor
On the lighter side, Master T, an impersonator and performer of the late r&b recording artist Barry White, provided a riveting tribute show for the second year in a row. The Michael Brookins and Friends Band provided stirring jazz and gospel selections throughout the afternoon.
A portion of the program included a video presentation on Ciera Brookins’ life. It moved viewers to tears as images of the young woman blended across the screen from childhood birthday celebrations to colorful Halloween costumes as a young adult and Michael Jackson’s “Gone Too Soon,” wafted softly in the background.
More About Lupus - And Black Women
According to the Lupus Foundation of America, an extensive review of records from hospitals, specialists’ offices and clinical laboratories within Georgia and Michigan showed black women had an increased proportion of lupus-related renal (kidney) disease and progression to end-stage renal disease than whites, and that black females developed lupus at a younger age than white females (“How Lupus Hurts,” click here).
Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is a cruel mystery because it's hidden from view and undefined, has a range of symptoms, and strikes without warning, and has no known cause or cure.
In 2018 (above), Master T performed Barry white’s hottest hits, such as Practice What You Preach. He came back this year after popular demand.
Providing an Arsenal of Treatments: No two lupus patients are identical, so multiple treatments are needed to manage the spectrum of disease. The medications most commonly used to control lupus include:
States Attorney Braveboy with Edgar Brookins
Nonsteroidal anti-inflammatory drugs (NSAIDs)
Antimalarial drugs
Corticosteroids
Immunosuppressants
Biologics
Rituximab (Rituxan) can be beneficial in cases of resistant lupus
According to research done with regard to systemic lupus erythematosus, a type of lupus, “greater understanding of the pathways and of the cellular and molecular mediators involved in SLE is being achieved. Emerging evidence has allowed the development of new biological therapeutic options targeting crucial molecular mediators involved in the pathogenesis of SLE,” reported by the National Institutes of Health in 2018.
The introduction of prednisone has increased the survival rates of those with SLE to 90% today in most specialized treatment centers, according to a January 2019 MedPage article.
The Fight Goes On
For more information about Lupus and local efforts to address the disease, log onto cbrookinslupusfoundation.org. “Become a supporter and help us find a cure for this dreaded disease,” Brookins says. “Our goal is "Life Without Lupus, Now."
