Summer in the South is a time to get outside and soak up the sun. But imagine if the sunshine you loved turned into your enemy.
“I spent my childhood on the sunny beaches of South Alabama,” said Karmeshelia Davis. “I never had to limit myself in what I could do until I started having lupus flares.”
For those who have lupus, UV rays in sunlight are just one of the many environmental triggers that can bring on a wide range of symptoms.
“I won’t let lupus defeat me, but it seems this disease is taking away things that are part of who I am,” said Davis, or as her friends call her, KC. “I’m a counselor at Space Camp in Huntsville, Alabama, and I have to be in the sun. My doctor told me to completely cover up or find a new job. That creates a lot of stress, which is also a trigger.”
What is lupus?
Lupus is a disease that occurs when something goes wrong with the immune system and the body attacks its own cells as if they were harmful invaders. For someone with lupus, their own antibodies can damage joints, skin, blood, kidneys, the brain and many other systems. Lupus is not contagious.
The Lupus Foundation of America estimates that at least 1.5 million Americans have lupus. It affects mostly women of childbearing age. Women of color are more likely to have the disease.
Why is lupus so difficult to diagnose?
Lupus, or systemic lupus erythematosus, is a disease of mystery and contradictions. Symptoms include fatigue, debilitating headaches, swollen joints, painful skin rashes and even swollen organs. Lupus is called the “great imitator” because the symptoms often mimic those seen in other diseases.
Lupus is difficult for people to understand because the disease can flare and then regress. Sometimes people look sick, but often they have no outward signs. People with the disease are not even seen by the same kinds of doctors. A rheumatologist, dermatologist, immunologist, nephrologist or other specialist may see a patient, depending on how lupus affects the body.
There is not a specific test to determine if a person has lupus. Doctors look at lab tests, symptoms and family history to help them diagnose the disease.
“Just because you have some of the symptoms of lupus, doesn’t mean you have the disease,” adds Jim Gore, M.D., a rheumatologist in the Division of Rheumatology and Immunology at Vanderbilt University Medical Center. “Many patients self-diagnose because they have fatigue, joint pain and are sensitive to the sun.”
What is the treatment for lupus?
There is no cure for lupus, but drugs and lifestyle changes can control flare-ups. Patients like Davis understand that treatments can be as varied as the range of symptoms. Drug therapy can suppress the overactive immune system, reduce inflammation, lessen pain and minimize organ damage.
Davis first had symptoms in high school, but wasn’t successfully diagnosed until her sophomore year in college.
“I tried a holistic approach at first. I was eating fish almost every day and spending $500 a week in alternative medicines,” Davis said. “I got sick of fish and tired of paying for pills.” After visiting a number of doctors, a specialist prescribed CellCept, a drug that finally helped bring some of her symptoms under control.
CellCept is a drug that can suppresses the immune system and was originally used to prevent rejection in organ transplant patients. Lifestyle changes that include staying active, reducing stress and eating a healthy diet can also help patients.
“Organizing the annual lupus walk in Huntsville has turned into my passion,” Davis said. “I know I need to keep my life in balance. Worrying about the details keeps me up at night, but getting involved and supporting others with lupus helps me cope.
“If I could tell people one thing about lupus, it would be that we may not look sick, but we can be dealing with great pain. We have our bad days when we might miss work, but we push through.”