Sydney Evans says her life for many years has consisted of family and friends, work and enjoying the things she liked to do.
The Hyattsville resident lived a relatively normal life until three years ago when she began to experience physical discomfort. A health-conscious person, Evans first went to doctors who couldn’t figure out her ailment but one of them said she had lupus. Then, she said, her life changed.
“I had heard about lupus before,” Evans, 35, said. “I have read where singer Toni Braxton had lupus and so did entertainer Nick Cannon, but I really didn’t know much about it until I was diagnosed with it in 2017.”
Evans has become one of 1.5 million Americans suffering from lupus, a lifelong systemic autoimmune disease that occurs when the body’s immune system attacks its own tissue and organs, according to Mayoclinic.org. A spokeswoman from the Lupus Foundation of America told The Informer no hard numbers exist for how many D.C. area patients have the ailment.
Mayoclinic.org said inflammation caused by lupus can affect many different body systems—including joints, skin, kidneys, blood cells, brain, heart and lungs. While people of all races and ethnic groups can develop lupus, women develop the disease much more often than men; nine out of every 10 people with lupus are women, statistics from the foundation, report. The foundation’s statistics also indicate lupus occurs three times more in Black women, such as Evans, than whites and as many as one in 250 African American women will develop the affliction.
Dr. Donald E. Thomas, a rheumatologist who practices in Greenbelt, Md., and deals primarily with lupus sufferers, said only “only 10 percent of my lupus patients are men” and “approximately 80 percent of my lupus patients are African American women.” He said every lupus patient “is different” and genetics and environment determine who gets the disease.
“Environment consists of triggers such as whether someone smokes cigarettes, is exposed to ultra violet light as an example of a recent trip to the Caribbean with lots of sun exposure on the beach, mononucleosis, low Vitamin D intake, stress and getting less than seven hours of sleep per night.” Thomas said. “As far as genetics is concerned, close to 150 genes have been identified that increase the risk of getting lupus, most people who have the genes that are prone to lupus don’t get the disease.”
Whether lupus has become more prevalent throughout the years has become difficult to assess, Thomas said.
“The reason is that our diagnostic tools are so much better today than in the past,” the doctor said. “The prevalence of lupus in the population is higher than present than in the past, but we are also able to diagnose it in milder cases and earlier in the course of the disease. So, it is not known for sure if this higher prevalence is due to their being more lupus overall, or if this higher number is due to better diagnostic skills.”
Thomas said an unhealthy environment plays a role in the development of lupus, citing a showing a January 2019 study published in the Cretan Lupus Epidemiology and Surveillance Registry, city dwellers tended to get lupus at a younger age than those who live in the country.
He said lupus reflects health care disparities. Thomas said while higher rates of lupus have not been shown to occur in the poor, poor people have worse outcomes and higher death rates.
Plus, Thomas said, a 2017 study found systemic lupus patients whose income status improves can reduce their chances for permanent organ damage.
Thomas said no cure exists for lupus but organizations such as the foundation “are working hard” to find one. He said medications such as hydroxychloroquine have been found to combat the disease and prolong life.
Evans said it took time for her to process the diagnosis mentally and emotionally. Through research she found living a healthy life could be possible by eating a proper diet, taking medications and avoiding triggers such as smoking and spending too much time in the sun.
Evans said her support network of family and friends as well as colleagues on her job as a project manager/executive assistant for a District nonprofit has had a positive impact on her life.
“If I ever need anything my family and friends tell me to call and they will respond,” she said. “For example, when I am dining with my aunt and if she sees me struggle to open a water bottle, she opens it for me without a word. At my job, my co-workers have been sympathetic when I could not make it to work and I directly report to the CEO and he has been very supportive and checks in on me. Of course, with the coronavirus pandemic in the city, we don’t go into the office, but my CEO still keeps tabs on me.”
Evans said living with lupus “isn’t easy but I have learned to manage.”
“Every day is different,” she said. “Some people call it an invisible disease because you cannot see the symptoms. People often say to me, ‘You don’t look sick.’ However, I endure at times, various bouts of pain and discomfort such as muscle pain and chest tightness. There are good days and bad days. There are some weeks when I feel great and then there are the times when I can’t get out of bed or days when I can’t move.
“One thing this disease has taught me is to appreciate every day. My advice to fellow warriors of this disease is having it is not the end. You can really thrive and live a good life.”