Newswise — MAYWOOD, Il. - Two months after giving birth to her first child, Courtenay Zurenko realized something was terribly wrong.
She was suffering from sore joints, swollen eyes, intense itching from an expanding rash and fatigue and weakness so overwhelming she could barely make it to the bathroom.
Previous doctors suspected she may have had lupus or an infectious disease such as mononucleosis. But Loyola University Medical Center rheumatologist Ruth Kadanoff, MD, PhD, took one look at Zurenko in the emergency room and made the correct diagnosis: dermatomyositis, a rare disease that strikes only about 1 in 100,000 people. A scaly rash on Zurenko's knuckles, combined with her extreme weakness, was the giveaway.
Zurenko, who lives in Elmhurst, Il., spent three weeks in the hospital, including a week in the intensive care unit. She endured adverse reactions to drugs, difficulty swallowing, hair loss, depression and terrifying grand mal seizures.
But she recovered from her illness, and recently was honored, along with other star rehab patients, at Loyola's recent Rehab Patient of the Year celebration.
Zurenko describes her harrowing illness and recovery in a new memoir, "Seizing Faith: Feeling God's Hands Through His Life-Changing Plans," and on her web site, http://www.courtenayzurenko.com/author/books/seizing-faith/.
She writes that she found some unexpected blessings-in-disguise from her ordeal. For example, the time she lost with her infant son Riley was "exponentially outweighed by the spiritual wisdom I had gained through this experience. I would be able to use this wisdom as a new mother and hopefully make a lasting impression on his little life."
Dermatomyositis is an auto-immune disease, in which the patient's immune system attacks healthy cells. Dermatomyositis is sometimes associated with cancer. But in Zurenko's case, the disease may have been triggered by a bad sunburn, Kadanoff said.
Zurenko was given prednisone, a drug to suppress her overactive immune system. But she experienced an abnormal reaction that caused extreme high blood pressure, which in turn triggered her seizures. She also had abnormal reactions to two other drugs, so she was given a second-line therapy, intravenous immunoglobulin (IVIG), plus a different steroid. Although the IVIG made her lose her hair, the treatment was successful.
The disease left Zurenko extremely weak and deconditioned. By the time she was moved to Loyola's inpatient rehab unit for physical, occupational and speech therapy, Zurenko could walk only about 100 feet at a time and needed help dressing and bathing. But doctors did not want her to work to the point of exhaustion, for fear of aggravating her symptoms. So her rehab sessions were limited to 45 minutes, with lots of rest breaks.
Physical and occupational therapists worked with Zurenko on activities such as walking, climbing stairs, dressing, bathing, homemaking and caring for her baby. Speech therapists gave her oral-strengthening exercises so she could eat again. When she was cleared to eat, occupational therapist Beth Vander Meulen brought her a piece of Portillo's chocolate cake.
"I'm pretty sure that was her favorite day on rehab," Vander Meulen said. "She was the kind of patient you always wanted to go out of your way for. Courtenay was always in good spirits, no matter what was going on with her health. She always had a smile on her face."
Although Zurenko is not cured, she is in good health and has experienced only minor flare-ups of skin rash. "She is an excellent mother and a lovely person," Kadanoff said.
In "Seizing Faith," Zurenko pays tribute to her faith in God, the love and support of her husband and parents and the "incredible" care she received at Loyola.
"The doctors always entered my room with a positive outlook. This gave me so much hope," she writes. "The nurses would go above and beyond the call of duty, helping me with anything from going to the bathroom to braiding my hair, just so I felt a little more like myself . . . I didn't feel like a statistic or just another problem to be solved. I felt human and deeply cared for."