Taking steps toward living with lupus

With three young children and a part-time job as a teacher's aide, Patty VandenHeuvel was a busy 33-year-old Naperville mom. That is, until her life was interrupted by lupus.

"It was back in ninety-seven. I noticed I had extreme swelling around my ankles," she said.

Doctors quickly determined that she had nephritis, or kidney inflammation, a serious symptom. At the root of the problem, she discovered, was lupus erythematosus.

Somehow, the autoimmune disease, a chronic malady that can damage any part of the body, had invaded her world, attacking her kidneys.

She was given prednisone, a steroid, to ease the inflammation, and chemotherapy drugs to suppress her overactive immune system.

Luckily, she said, she was not alone as she went through the diagnosis and treatment of a disease she knew hardly anything about. She had her husband there to support her, along with friends.

"We have great friends who helped take care of the kids," she said.

Now, 10 years later, VandenHeuvel is serving as chairwoman of the Lupus Foundation of America-Illinois Chapter's second fundraising walk in Naperville.

On Sunday, walkers will gather at the Grand Pavilion on the west end of the Riverwalk and walk either a 1-mile or 3-mile route in support of the nonprofit organization.

Funds raised will support the foundation's mission, said Mary Dollear, the Illinois chapter's vice president of health promotion.

The foundation strives to improve diagnosis and treatment of lupus, support patients and their families, increase awareness of the disease and support research aimed at finding causes and a cure, she said.

The Naperville walk is one of three in Illinois. A walk along Chicago's lakefront will be held Sept. 30, she said. And a smaller walk was held last month in Eureka.

Last year, the three walks combined generated about $250,000. Five hundred people walked in the Naperville walk, bringing in about $75,000.

This year, Dollear said, about 600 people are expected to walk and bring in about $85,000.

"Not only does it raise funds for our mission, it's a great opportunity to talk about lupus," she said.

VandenHeuvel managed to keep her disease in check with medicine and regular doctor visits until 2001, when she experienced a flare up that culminated with an episode that left her unconscious. Her husband and daughter discovered her and rushed her to the hospital.

"They think I probably had a seizure," she said.

After several weeks in the intensive care unit at Edward Hospital, she began to recover with the help of physical therapy.

Stress, she said, was the culprit. Physical and emotional stress, along with certain drugs, viruses, infections and injuries, can precipitate a flare in lupus patients, according to the foundation.

VandenHeuvel stopped working and curtailed her activities.

"I learned to slow down because I have to," she said. "It's important to recognize your limits."

She started a support group for lupus patients. The group meets monthly at the Naperville Municipal Center.

And she campaigned for the Lupus Foundation, an organization she's been involved with for more than five years, to bring a walk to Naperville.

"We really needed to bring awareness of lupus to Naperville," she said.

This year's walk will feature a cheerleading squad from North Central College. A member of the squad, 20-year-old Kara McKeighan, was diagnosed with lupus when she was 14.

VandenHeuvel said her daughter, Meghan, met Kara when the two were students at Naperville Central High School.

With her mother, Patty, navigating the complexities of the same disease, Meghan was one of the few students in Kara's class who really understood what the high-schooler was going through.

Kara's mother remembers how lupus intruded on the McKeighan family's life.

"Right before she began at North Central College, she wound up getting a rash on her legs and her arm and she started getting very tired, very extremely fatigued," Renee McKeighan said. "As a competitive gymnast, for her, hours in the gym was nothing. All of a sudden she couldn't get out of bed."

Nowadays, Kara cultivates good health habits and carefully manages a busy life.

"She is a trooper," her mother said.

If you go

What: Walk for Lupus Now

Who: Illinois Chapter of the Lupus Foundation of America

When: 9:30 a.m. Sunday; registration begins at 8:30 a.m.

Where: Grand Pavilion on the Naperville Riverwalk

Info: (312) 542-0002 or lupusil.org