In one girl's scary and emotional ordeal, the disease was ravaging her kidneys and it took months before she could get a diagnosis. Now her family's on a quest to warn others.
"She was completely healthy, she was my athlete. She was the captain of the softball team," said Bonnie Kassel.
But in January 2011, Kassel and her husband were shocked to see their daughter's health take a baffling turn. For three weeks, Taylor Kassel battled a high fever. After trips to the emergency room she was eventually diagnosed with pneumonia. And then the unusual symptoms started. She was lethargic, her legs would give out and she was losing a lot of hair. But still, they got no answers.
"I was very frustrated. I just wanted to know what was wrong with me," said Taylor Kassel.
Then a rash appeared on her face and her mother suspected lupus. But she says a pediatric dermatologist dismissed the possibility. Kassel says she demanded more extensive tests.
"The following day all of her autoimmune tests were way off the chart. This kid was sick," said Bonnie Kassel.
Difficult to diagnose and treat, lupus is a tricky disease where the immune system turns on itself and attacks virtually every organ in the body. There can be episodes of flare-ups and remissions which can range from mild to life-threatening. More than one and a half million Americans are believed to have lupus.
"I felt really tired and slept all of the time and I was like what is going on," said Ashley Santos, 16, lupus patient. "I was relieved I caught it early on."
Santos was lucky to get diagnosed quickly. She's now on medication and doing well.
More than 90 percent of those with the disease are young women between the ages of 15 to 44. It's more likely to strike women of color.
Lupus nephritis is considered a complication of the disease caused by inflammation of the kidneys. Harmful toxins may build up in the body causing serious damage.
"Missing the diagnosis and the chronic inflammation that sets in and the organ damage that sets in are what make it more difficult for patients to do well," said Dr. Marisa Klein-Gitelman, pediatric Rrheumatologist, Children's Memorial Hospital.
According to the Lupus Research Institute, lupus is widespread but awareness and knowledge is lacking. Dr. Klein-Gitelman agrees. She says healthcare providers may not recognize lupus in children because they don't realize it can also strike younger patients.
"It is a myriad of symptoms and each patient is unique so you do need to have some idea and what to look for," said Dr. Klein-Gitelman.
Signs to look for include unexplained prolonged fever, extreme fatigue, unusual hair loss and a red rash on the face.
"I just want mothers to know when you see those signs pay attention be assertive ask questions," said Bonnie Kassel.
The Kassel Family is now on a mission to increase awareness. After months of chemotherapy to help her kidney's, 14-year-old Taylor Kassel is doing well. She's on medication, eating healthier and planning to play softball this spring. She hopes to inspire others living with lupus.
"Never give up and never stop believing," she said.
Taylor Kassel has been named an ambassador for the Lupus Foundation. And while it can be a severe life threatening disease, many patients can do well once they are treated. Research into newer treatments and ultimately a cure are ongoing.
Lupus Research Institute
Lupus Research Institute
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Lupus Foundation of America, Illinois Chapter
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Chicago, IL 60661-3793
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Taylor's Team" on Facebook at www.facebook.com/TAYLORSTEAM