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Patient: “Extremely rare disease diagnosed because I was at a teaching hospital”

IU Health Methodist Hospital

Patient: “Extremely rare disease diagnosed because I was at a teaching hospital”

Some of her symptoms went unrecognized; others were more obvious. In the end, it was a team that included researchers, residents, and physicians that uncovered the mysterious cause of Jane Lees’ illness.

By IU Health Senior Journalist T.J. Banes,

Not only had she never heard the name, Jane Lees is one of the many women diagnosed with the disease that resulted in an updated name for her illness.

For years, the disease was known as “Stiff Man Syndrome.” But when more and more women began to be diagnosed with the debilitating illness it was renamed, “Stiff Person Syndrome.” The rare neurological disorder is similar to an autoimmune disease causing trunk and limbs muscles to go rigid and spasm, and causing a heightened sensitivity to noise and emotional stress. Some researchers believe the disease can be focused on one area of the body or spread throughout the body – affecting the brain stem and spinal cord.

Because it mimics other conditions where patients can have difficulty walking or performing daily tasks it can be confused with other common diagnoses.

For Lees, that diagnosis was initially Type 1 diabetes. She was 57 years old at the time. That was a year ago.

“I went through lots of doctors and lots of testing. I was in and out of the hospital. I had a demanding career and I noticed I was weaker and more tired than usual but I just thought I needed get back to the gym,” said Lees.

Born at Methodist Hospital, Lees grew up in South Bend with her parents and younger brother.

“I did everything in high school – cheerleading, track, debate, plays, and yearbook editor. I was a mediocre student and went on to get a political science degree at Ball State University,” said Lees. After college she married, had three children in four and half years and eventually moved to Texas and became a sales manager for a radio station.

“From back when I was the editor of my high school yearbook up through my time with the radio station I’ve been driven by deadlines. I’m a Type A personality and I wasn’t ready to slow down but this disease has forced me to slow down,” said Lees.

After 13 years working with the radio station, she moved back to Indiana to be closer to her three children and two grandchildren. She made the move last March and in early May she was hospitalized. In addition to feeling stiff, weak, and tired, she had gastrointestinal flare-ups and muscle spasms that came on – sometimes without warning. Because it’s a neurological disease it also impacts her emotionally.

“There’s a huge mental component so what your brain tells your body is hard to argue with,” said Lees. “I’m not a crier, but there are days I cry for no reason. I’m not a quitter so there are days I have to tell myself, ‘I’m going on a walk or I’m going to stand up for 30 minutes and I’m not giving in.”

Under the care of IU Health neurologist Dr. Richard Scheer and a team of interns, residents and researchers, Lees was diagnosed last August with Stiff Person Syndrome. The disease affects about one in a million people and predominately females between the ages of 30 and 60.

“After going through lots of doctors and lots of testing, I believe this extremely rare disease was diagnosed because I am at a teaching hospital. The team entered the room and told me they had figured it out,” said Lees.

Since October she has been receiving intravenous immunoglobulin therapy (IVIg) every three weeks at IU Health Simon Cancer Center. At a recent treatment, nurse Rhonda Weinzapfel administered the therapy that is used to help people with weakened immune systems. In autoimmune diseases like lupus, the treatment may help the body raise low red-blood-cell counts, which can result in anemia.

“From day one I feel like the IU Health team has been compassionate and truly believed me when I said I was sick. When you’re dealing with a rare disease or a chronic illness it can be frustrating not knowing the answers,” said Lees. “I could go anywhere else but I came back to IU Health because if you manage people like I have all my life, you have a teaching heart and you want to be some place where they are integrating a learning experience that helps improve the outcomes.”