Unpredictable lupus hard to diagnose, but usually treatable
Taylor Kassel struggled with health problems for more than a year before knowing exactly what was going on with her body.
The 15-year-old had a rash on her face, lost her hair and was so weak that she could barely stand without falling. There also was a stretch where she had to go to the emergency room three straight weeks with a fever of more than 105 degrees.
After visiting several doctors, she was correctly diagnosed with lupus nephritis, the most serious form of systemic lupus erythematosus, most commonly referred to as lupus.
“It was really scary and frustrating going from doctor to doctor and them not being able to tell me what was wrong,” said Kassel, a sophomore at Crystal Lake South High School. “I’ve had to change everything from my eating habits to my daily routine, but I’m not going to let lupus run my life.”
The Crystal Lake teen is one of more than a million Americans suffering from the potentially fatal autoimmune disease, according to the Lupus Foundation of America. Although an unpredictable and chronic disease that proves difficult to diagnose, lupus usually is treatable through medication and other therapies.
Two years later, through a drastic diet change and several medications, the softball and volleyball player at South has been able to control her lupus, which includes heart, lung and kidney disease, as well as rheumatoid arthritis. That includes spending between $18,000 and $25,000 a year on nutritional products and hospital visits.
“Our whole life has been turned upside down,” said her mother, Bonnie Kassel. “Taylor is beating the odds. There is a fine line we have to walk between trying to keep her busy and tough and being empathetic.”
In most people, the immune system protects the body against viruses, bacteria and other foreign substances, according to the Lupus Foundation of America. In lupus, the immune system loses its ability to tell the difference between good and bad, and creates antibodies that target the body’s own tissue.
The disease affects men and women of all ages, but occurs more frequently in women, as well as African-Americans and the Hispanic population, data show. About 10 percent of people with lupus will have a relative with the disease, and about 5 percent of children born to individuals with lupus will develop the illness.
There are several forms of lupus, including cutaneous, systemic, drug-induced, overlap syndrome and mixed connective tissue disease.
Inflammation and tissue damage to organ systems in the body usually occurs, including in the joints, kidneys, lungs, brain, blood, blood vessels and skin. Symptoms include achy joints, frequent fevers, arthritis, extreme fatigue, skin rashes and anemia, to name a few.
“Lupus manifests itself in a variety of ways, but because they all aren’t there right away, it makes it difficult to diagnose,” said Dr. Glen Weiner, a rheumatologist at Advocate Good Shepherd Hospital in Barrington. “Once diagnosed, there is reason for optimism, as the majority of people survive.”
The most common screening for lupus is an antinuclear antibody test.
Because a small portion of those who take the test come back false positive, a proper diagnosis generally includes test results concurrent with showing symptoms as well as other blood tests, Weiner said.
Diane Magerko had been struggling with extreme fatigue for more than 10 years.
At first she was told it was just stress, and then she had a blood test and was diagnosed with arthritis. It wasn’t until seven weeks ago that she was diagnosed with a mild case of lupus.
She now is on an antimalarial drug commonly used to treat lupus.
“You know when your body is off,” said Magerko, of Lake in the Hills. “I’m one of the lucky ones because it’s not too serious, but others aren’t so lucky. Enough people don’t know what it is or how to get diagnosed.”
Similarly, Michelle Giannetti had been feeling so bad for so long, that as a gift for her 42nd birthday, she scheduled a visit to the doctors for blood tests.
The Crystal Lake resident was diagnosed with lupus on April 15, and started treatment with medication shortly after.
“I thought I was just dealing with stress initially and possibly a hormonal imbalance,” said Giannetti, who found out she was anemic and had low blood platelets. “No one ever understood what was wrong with me until I got the proper tests.”
Researchers do not know the exact cause of lupus, but the disease is not infectious.
Some believe there is a genetic predisposition to the disease, and that some environmental factors trigger lupus, Weiner said. Some hormonal factors also may explain why it occurs more frequently in women than men.
“It varies tremendously,” he said. “You could have a family of four kids, and one may have it and the rest don’t. It’s a complicated scramble of the genes.”
Those with lupus can generally keep the symptoms in check, reduce inflammation in joints and maintain normal body functions through the use of medication, including steroids.
Each treatment plan depends on the severity of the illness, and routine checkups are key to stabilize the disease.
Oftentimes, a patient will at some point need to consult a rheumatologist, who treats arthritis and other diseases of the joints.