Lupus Affects Black Children Differently. Here’s What Parents Should Know About Symptoms & Treatment
Erin Johnson was in middle school when she began experiencing severe exhaustion, joint pain, and skin rashes. She initially thought it was due to over-practicing as a member of the drill team. “My mother was so worried,” Johnson tells SheKnows. “I was deteriorating before her eyes.”
Johnson’s godmother had been diagnosed with lupus in the 1960s, but the family didn’t know much about the condition. When Johnson’s mother sought answers from doctors, one diagnosed her with depression, while another suggested she was malingering (a term that means exaggerating or feigning illness to get out of work or duty) and should be placed in a long-term mental health facility. “That was insulting,” says Johnson. “My mother really had to advocate for me.”
The answer to her pain came by accident.
Johnson, who was born with Poland’s Syndrome (a congenital condition affecting the upper left extremities), was scheduled for tendon lengthening surgery and had to complete pre-op bloodwork, which included an HIV test that came back positive. “I wasn’t sexually active, but it was around the time Ryan White, a teen who became a national symbol for HIV/AIDS awareness, died after contracting the virus via a blood transfusion. Hospitals often used donor blood for surgeries, so it was a scary time.” After weeks of uncertainty, the test was found to be false positive, a common occurrence when diagnosing lupus. “I was relieved I didn’t have HIV and to finally have a diagnosis—pediatric SLE, known now as Childhood-Onset Systemic Lupus Erythematosus (cSLE),” Johnson says.
According to the Lupus Foundation of America, cSLE makes up 10 to 20 percent of all lupus cases, with an estimated 1.5 million Americans and at least five million people worldwide affected by some form of lupus. Ninety percent of those with the condition are women of childbearing age who develop the disease between age 15 and 44. It is three times more common among African American, Hispanic/Latina, Native American, Alaska Native, Native Hawaiian, and other Pacific Islander women compared to White women.
“Lupus turns the body’s immune system, which protects against viruses and bacteria, against itself,” says Dr. Maureen McMahon, a professor of medicine and rheumatology at the David Geffen School of Medicine at the University of California, Los Angeles. “Instead of just attacking foreign invaders, it begins to attack the body’s tissues.” Common symptoms include severe inflammation of organs, joints, and skin; fever without infection; extreme fatigue; weight loss; mouth ulcers; hair loss; cognitive problems; and physical impairments that affect every part of life. Many also experience cardiovascular disease, strokes, and a butterfly-shaped rash. For others, there may be no visible symptoms.
A groundbreaking 1999 study called Lupus in Minority Populations: Nature vs. Nurture (LUMINA) reported that African American lupus patients are more likely to have lower levels of social support compared to White lupus patients. Children are more prone to severe kidney (lupus nephritis), brain, and lung involvement, and need evaluation by a pediatric rheumatologist to identify specific autoimmune markers, often through blood and urine tests to check for organ damage. Although incurable, lupus can be managed with lifelong medication, including steroids (for flares), immunosuppressants like hydroxychloroquine, and other disease-modifying drugs. Early diagnosis is essential to prevent permanent organ damage. With proper care, most children can go on to lead active, healthy lives.
Johnson is one of them. Once told she would never have children, today she is a married mother of two and diligent about managing her condition. “I would go as long as eighteen months without a flare until my son was born in 2020. Since then, I have had 12 flares in five years. I know the exact number because ever since college — I have meticulously tracked my flares and triggers.” Despite nonstop family activities and full-time work as a college professor, Johnson knows when to slow down. “My kids are still young, but they understand that mommy can’t be in the sun too long and needs to rest sometimes,” says Johnson. “I’ve noticed that my son has a strong aversion to prolonged sun exposure, so I am keeping a close eye on him because his symptoms remind me of my early symptoms.”
Johnson’s advice to those who may be dealing with similar issues: “It may sound cliché but listen to your body. If you need to rest, rest. If you don’t like the side effects of a medication, tell your doctor. Never suffer in silence or try to be a lupus martyr, and don’t let doctors make lupus your ‘catch-all.’” She explains, “I’ve had many doctors dismiss my medical complaints with, ‘Oh, it’s just your lupus.’ After one surgery, I experienced uncontrollable sweating, chest pains, and felt faint. The ER doctor told me it was my lupus. Two hours later, I fainted, was rushed to the hospital, and my hemoglobin level was 6. I was bleeding internally. It had nothing to do with lupus.”
Nurse educator Tara Cox not only helps patients manage their conditions, but was herself diagnosed with lupus in 2021. “I woke up one day unable to move my arms and legs,” she tells SheKnows. Blood tests showed she was positive for Anti-Nuclear Antibody (ANA), indicating her blood had antibodies that might attack her own healthy cells. Cox was told by a doctor that her symptoms were just the typical wear and tear of age. She was initially prescribed chemotherapy medication and advised to switch to a Mediterranean diet, which weakened her immune system. After complaining that she did not feel better, she was then told she was seeing the wrong doctor and referred to a rheumatologist. “If it can happen to me, someone in the medical field, it can happen to anyone,” Cox says.
7 Ways to Keep Lupus at Bay
Limit Sun Exposure: Protect your skin from direct sunlight, especially during peak midday hours, and use a daily sunscreen with SPF 50 or higher. If you must be outside, wear a wide-brimmed floppy hat that covers your face, put on protective clothing, and stay in the shade.
Rest Up: Fatigue is a common symptom of lupus. Getting quality sleep each night, between 7 and 9 hours, helps the body recover and manage inflammation.
Diet: Anti-inflammatory foods like fruits and vegetables, whole grains like whole-wheat bread and pasta, oatmeal, and brown rice, healthy proteins like lean meats, poultry, beans, nuts, and eggs, and healthy fats like olive oil, avocados, nuts, and fish are all beneficial. The Lupus Encyclopedia: A Comprehensive Guide for Patients and Health Care Providers (A Johns Hopkins Press Health Book) by Donald E. Thomas Jr. is a valuable resource.
Exercise: Stress is a common trigger for lupus flares. To boost energy and joint health, try low-impact exercises. Cox does yoga, Pilates, meditation, and weight training. Johnson’s motto is “slow and steady wins the race.” Instead of running for 20 minutes, she will walk for an hour. “Water aerobics in my home pool has been a game-changer,” she adds.
Take medications as prescribed: Never skip doses, alter, stop, or start new medications without consulting your rheumatologist. Supplements can also be beneficial. Cox likes Immuni Bloom by Verniqo Health, an anti-flare gummy supplement that supports joint and autoimmune health for lupus and rheumatoid arthritis.
Vaccines: Children with cSLE should not be given live vaccines (e.g., MMR, chickenpox) because there is not enough immunity in their system to attack the vaccine. Consult your pediatrician about alternative treatments.
School Impact: Chronic fatigue and disease management can impact school performance and mental health. When she is overwhelmed or anxious, Johnson sometimes gets painful mouth sores, which makes it hard to eat. She uses prescription-strength mouthwash for sores.