A Medical Mystery Solved
A Lifelong Mystery
Couch was first hospitalized when she was four years old, and she struggled with constant infections, eardrum ruptures, fractures, asthma, blurred vision and migraines throughout her childhood. She had severe coughs that would fracture her ribs, and she would get frostbitten even on a mild winter day.
“I wasn’t technically disabled, but I wasn’t living a normal life,” Couch recalls. “No one knew what was wrong with me; the doctors called me ‘a medical mystery.’”
At 18, Couch was diagnosed with Lupus, a disease in which the body’s immune system mistakenly attacks healthy tissue. At last, there seemed to be an answer. She occasionally had good days and later married and raised eight children. But her symptoms would always return and worsen. She became so sensitive to light she wore sunglasses to watch TV. She lost weight and began having trouble walking, talking and breathing. For the next several decades, Couch relied on a wheelchair, a service dog, and the help of her family and various caregivers to get through each day. She stopped working and driving. She couldn’t be alone.
Finding the Right Physician
Couch continued to see more physicians, but nothing seemed to be working. She also discovered that a high-dosage prescription for Prednisone, a steroid used to treat various conditions, had been causing many of her symptoms. Again, she thought she had found the answer. But again, her symptoms continued and worsened.
“Over the years I kept thinking, ‘Ok, this is the problem,’” she says. “But then I would have to go back to the doctors. Some of them even began questioning my mental health.”
Couch found her way to Charulatha Nagar, MD, a board-certified neurologist at Northwestern Lake Forest Hospital. That’s when things began to change.
An Answer—and Advanced Treatment
“Dr. Nagar was so determined, positive and encouraging,” says Couch. “She told me I could have a normal life.”
Like previous physicians, Dr. Nagar determined that Couch had 16 different autoimmune conditions, but she believed there was an underlying problem as well. She ran several tests and diagnosed Couch with myasthenia gravis, an autoimmune disease caused by antibodies that reduce nerve receptor sites, causing weakness in muscle groups.
“Lupus has overlapping features with myasthenia gravis,” explains Dr. Nagar. “I knew that we might get her Lupus treatment on track if we could try intravenous immunoglobulin (IVIG), a treatment in which blood plasma proteins are replaced intravenously—but it’s difficult to get it approved.”
A Life-saving Advocate
Meanwhile, Couch’s droopy eyes, slurred speech and difficulty breathing—classic myasthenia gravis symptoms—were sharply increasing. She was admitted to the Northwestern Lake Forest Intensive Care Unit while Dr. Nagar worked tirelessly to arrange for IVIG treatment, even speaking directly with the insurance company’s medical director who decided that Dr. Nagar’s recommendation was worth trying. Thanks to Dr. Nagar, Couch stabilized, left the ICU and started receiving IVIG treatments at Northwestern Grayslake, close to home.
Giving Back with JK Jackets for Kids
After Couch completed her treatment, it took time for her family to get used to her mobility. When she stood up, her kids would jump up too; they were still ready to catch her from falling. That summer, Couch got the first mosquito bite that didn't make her ill for days. And instead of being pulled by her service dog, she began taking runs alongside him. Her speech and vision cleared.
Couch also started an organization called JK Jackets for Kids. An amateur artist, Couch paints characters on thrift-store jean jackets and donates them to children with chronic, disabling conditions and illnesses. When her granddaughter Kera was battling leukemia, Couch began sending the colorful jackets to other young patients in Kera's Facebook group. Word spread and she now receives hundreds of requests, including some from Canada and Europe.
“I feel fantastic, and I want to give back,” she says. “It’s all thanks to Dr. Nagar’s expertise and not giving up. With the right doctor, it’s possible to be restored and live the life you want.”