When Shirley Brummell of Burr Ridge was diagnosed with lupus in 2001, neither Shirley nor her family anticipated the impact the disease would have on her life.
With three sons raised and a daughter in high school, Shirley and her husband Charles were almost empty nesters in 2000 and she used that opportunity to commence coursework for a Master’s degree in pastoral counseling. Around that time, Shirley, who was in early 50’s, noticed swelling in her hands and feet as well as severe fatigue. Though she began consulting doctors towards the end of 2000, it wasn’t until spring of 2001 when she was finally diagnosed with lupus, a chronic autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually every organ system in the body.
On one level, Shirley’s lupus diagnosis was a relief – explaining the fatigue and discomfort she’d been experiencing. On another level, however, the diagnosis brought fear about its impact. It also involved learning about the disease and explaining it to others since people with lupus usually do not look ill even when the disease is raging in their bodies.
The health effects of lupus range from mild to life-threatening and the disease vacillates between periods of remission and periods of increased activity, called flares. Although she had heard about lupus flares, Shirley was caught off guard when she was struck with her first episode. “I didn’t know what was happening,” Shirley says. “I was rushed to the hospital where I had a seizure in the emergency room.”
In addition to other life-threatening symptoms, Shirley developed a clot in her kidney, causing her kidneys to lose function. Following a six week hospitalization, during which time she also suffered a cardiopulmonary arrest, Shirley was on kidney dialysis for 2 ½ years, eventually receiving a kidney transplant 5 years ago.
Though her dialysis included 3-weekly, 2 ½ hour appointments, Shirley was determined to complete her Master’s program and used dialysis sessions to study. Adjusting to lupus was a family affair for Shirley and her husband Charles. His concern for her was great that while Shirley was in graduate school, Charles drove her to and from classes, dropping her at the door to save her the added strain of walking to and from the parking lot.
Despite her health issues, Shirley obtained her Master’s degree and is currently employed by her church to conduct crisis counseling while working on her dissertation for a Ph.D. in Organizational Development. After ten years of living with the disease, Shirley believes living well with lupus is possible. “I had to learn I can do whatever I want to do, but I have to listen to my body all the time and pace myself. Balance is key.”
Her husband Charles, a successful businessman who was in retirement when Shirley became ill, felt fortunate to be able to provide emotional and physical support to his wife. As a result of their experience, Charles came out of retirement to serve as President and CEO of the Illinois Chapter of the Lupus Foundation of America in April 2010.
There is no single test for lupus and symptoms like fatigue, achy joints and swollen joints can make lupus difficult to diagnose. Researchers do not know the exact causes of lupus, which is not contagious, but it is believed that individuals with lupus have a genetic predisposition to the disease. Certain environmental factors seem to play a role in triggering lupus, including: infections, antibiotics, ultraviolet light, extreme stress and hormones. Hormonal factors may explain why 90% of lupus patients are women.
And lupus doesn’t limit itself to one part of the body. Besides the kidneys, lupus can affect many parts of the body, including the skin, joints, blood and blood vessels, heart, lungs and brain.
The Lupus Foundation of America, Illinois Chapter’s (LFAI) supports the Illinois’ lupus community, estimated at 65,000, through programs and services. To support its mission, the LFAI hosts annual Walk for Lupus Now events throughout Illinois.
For years, the entire Brummell family has supported Shirley at the Western Suburbs Walk for Lupus Now – and this year is no different. “My kids and their families all come out to support me – and sometimes my brothers and their families come from out of town to walk with us.” Over 800 participants are expected at this year’s event – and family friendly activities are already being planned.
You too can get involved!
Register for Walk for Lupus Now!
Get ready! Get motivated! Get involved!
Go to www.lupusil.org for more information on walk day activities!