In the middle of the night, while her child slept in a room nearby, Kimberly Dansby awoke on the bathroom floor, having suffered her third grand mal seizure in a year. These episodes were just the latest occurrence in a decade-long fight against an illness her doctors couldn’t name–one that left her intensely fatigued and losing her hair.
It all began in 2004. “[T]hree months after I had my daughter, I started going bald,” says Dansby, 31. “And I was so tired. But I simply thought, ‘I just had a baby, I’m going to school full-time and I’m working full-time. Of course I’m tired.” The then- 22-year-old Dansby could not have fathomed that systemic lupus erythematous (“lupus”) would leave her permanently disabled, unable to work and fighting for her life by her 30th birthday. It would take 6 more years and a series of misdiagnoses before her doctors finally discovered what was plaguing her.
The disease impacts an estimated 1.5 million Americans, the most famous including singer Toni Braxton and TV personality Nick Cannon. Because of the ailment’s proclivity toward misdiagnosis, the actual number of cases may be higher. A conundrum of the deadliest sort, lupus can present simply with joint pain, fatigue, and skin rashes. But beneath the surface, the immune system has activated abnormally, unable to tell the difference between fighting infections and fighting the body’s healthy cells and tissues. In essence, the body turns on itself, and its overactive immune system targets vital organs like the liver, kidney, skin, and even the brain. Some lupus patients are hospitalized with weeks-long fevers while others suffer inexplicable organ failure. While the cause of lupus is often unknown, genetics and sun exposure may be among the culprits.
“Autoimmune diseases, a group that includes lupus, collectively rank among the top 10 causes of death for young and middle-aged women in the United States,” says Emily Somers, PhD, ScM, assistant professor of
Medicine, Environmental Health, and OB/GYN at the University of Michigan. Somers notes that this statistic is not well-recognized, since in many ranking systems, autoimmune diseases are not grouped together like other disease categories, such as cancers or cardiovascular diseases.
Somers recently conducted a study that found lupus to be three times more prevalent among African-American women, and that African-American women tend to develop more severe forms of the disease at an earlier age. “There’s always been the suspicion that African-American women are at higher risk, but being able to enumerate this helps us identify the resources that we need to put toward the problem from a healthcare perspective.”
Shortly after learning of her condition, Dansby launched the Purple Rose Foundation, which supports lupus patients in Southern California. With the help of dedicated volunteers, the organization offers housecleaning and shopping services, scholarships, gift cards for prescriptions, and school supplies for young lupus sufferers. “That’s $20 they don’t have to spend,” Dansby says, “and now they can put that toward medication.”
Medication costs can be staggering. In 2011, the New York Times reported that immune-suppressant Benlysta, the first FDA-approved drug to be developed specifically for lupus, may cost patients $35,000 a year.
“Benlysta is [created through biological processes instead of a combination of chemicals]. The development of these types of drugs is very expensive. Accessing such drugs may be challenging, particularly for underinsured and uninsured populations,” Dr. Somers says. “Studies also indicate that certain groups of lupus patients may not respond as well to Benlysta, particularly African-American patients.”
Upon diagnosis, Dansby was placed on a suite of immunosuppressants and a bi-weekly, $22,000 dose of chemotherapy to kill her overactive white blood cells. The then-employed Dansby’s insurance required only a $50 copay. In 2012, as a festering brain infection became aggressive, she began to experience seizures. The infection also increased her stroke risk, and her rheumatologist determined that she could no longer work. In filing for permanent disability, she qualified for Social Security Disability Insurance and Medicare benefits, but only after a government-imposed two-year waiting period; she only had enough medication to last her 60 days. The pills ran out.
When she was lucky, Dansby could get a 30-day supply of drugs through the local hospital’s program for low-income patients. If she couldn’t get access to the 8-to-10 medications needed to manage the scrum of diseases in her body, she’d only take her seizure prescription, scraping together generous offerings from family and friends to foot its monthly $756 bill. The one month she couldn’t afford it was the night she seized on the bathroom floor. The limbo continued until late 2013, when Dansby became eligible for Medicare benefits that grant her all necessary drugs, treatments, therapies and monitoring for a $49 monthly premium and a $23 co-pay.
Despite occasional flare-ups and hard days, Dansby is moving forward full-throttle, growing the Purple Rose Foundation, which will host more than 2,000 people at its first-ever Lupus Awareness Walk on May 10, in Riverside, California. Though some days she wonders about God’s mysterious ways, she’s grateful for the opportunity to aid others in making sense of a puzzling disease. “I wanted to use my social work degree to help people. And I guess I am using my degree. Just not in the way I thought.”
This article was published on EBONY.com on March 10, 2014.