Support group helps ease pain for Wichita lupus sufferers

Michelle Chippeaux-Kammerer remembers lying in a fetal position, praying to not suffer any longer.

Steve Hartman contemplated suicide and has undergone two amputations and four heart procedures.

Burgundy Castillo couldn’t hold her newborn baby or comb her young daughter’s hair anymore.

They all share the same diagnosis: lupus. But the symptoms and treatments for the autoimmune disease they endure vary.

“It has many, many faces,” said Via Christi Clinic rheumatologist Teresa Reynolds, who has been treating lupus patients for 30 years. “It’s like snowflakes; no two patients are alike.”

Lupus is a complex disease that causes the body’s immune system to turn on itself, attacking healthy organs and tissues. It’s difficult to diagnose since lupus has diverse symptoms that mimic other diseases. Symptoms can range from mild to life-threatening.

According to lupus organizations, it affects about 1.5 million Americans, about 90 percent of them women. It tends to strike women between ages 15 to 44, with women of color two to three times more likely to develop lupus than white women, according to the Lupus Foundation of America.

It’s also a disease that has no cure. Patients who have lupus often manage it by taking antimalarial, steroid or chemotherapy drugs and by avoiding emotional and physical stress, the sun, infections and injuries, which can cause flare-ups of the disease.

In the past 50 years, only one drug has been developed and FDA-approved to specifically treat lupus, a medication called Benlysta, which helps block a protein that fuels the body’s attacks on its own immune system.

Calling attention to the disease

Lupus is getting some recent attention following the early-October announcement that pop star Selena Gomez had put her career on temporary hiatus as she underwent chemotherapy treatment for lupus. Officials with the Lupus Foundation said they saw a spike in traffic to the foundation’s website following that revelation, as people sought more information about the disease.

While Gomez is “uncomfortable” talking about the disease – her response when asked about it during an appearance on NBC’s “Today” show – Chippeaux-Kammerer is on a mission to educate people about lupus.

A customer service manager at Intrust Bank, Chippeaux-Kammerer founded a local support group for lupus patients and their families in 1986, and she is always willing to talk to patients who’ve been newly diagnosed or who need encouragement. Once, when an out-of-town patient was hospitalized in Wichita and family couldn’t make it in time, she sat with her.

“Michelle is my go-to girl if I have someone who has lupus and wants to talk to someone,” Reynolds said.

Hartman credits her with talking him into continuing treatment when he hit a low spot battling the disease. Hartman, a former correctional facility officer, was diagnosed with lupus in 1989, after he noticed joint and hand pain following an altercation with a prisoner.

Chippeaux-Kammerer, 55, battled symptoms of lupus for nearly 10 years before getting a diagnosis at age 25. As a teenager, she felt joint pain going up and down the stairs at Bishop Carroll High School, and participating on the school’s bowling team sometimes brought her to tears. Later, in her early 20s, she dealt with numbing pain that caused trips to the emergency room and even hospitalization. She later developed a rash, her gums were bleeding and her blood platelet count was abnormally low. During doctors’ visits, she was given various explanations for her symptoms, including multiple sclerosis and Hodgkin’s lymphoma.

It wasn’t until doctors removed her enlarged spleen that they diagnosed her with lupus, Chippeaux-Kammerer said.

“I was relieved to have a true diagnosis,” she said.

But she still would suffer pain. Doctors told her they wanted to “reboot” her system by giving her a chemotherapy drug. It paralyzed her digestive system, and her food wouldn’t digest. She was on high doses of prednisone, too. She lost most of her hair, had mouth sores and weighed only 90 pounds.

“I was at my lowest point, laying in a fetal position on the floor, asking God to take me and not let me suffer,” she said. That’s when Chippeaux-Kammerer decided she needed to help others battling this mysterious, painful disease, she said.

She started the support group shortly afterward.

Local support group helps

Hartman and Castillo come as often as they can to the group’s monthly meetings, saying they’ve found comfort visiting with others who share their diagnosis but not necessarily their exact symptoms.

The disease has ravaged Hartman’s heart, leading to four heart procedures. A toe infection that wouldn’t heal led to the amputation of his right big toe, then a partial foot amputation this summer. Years ago, the 58-year-old had to quit his job when he feared that his weakening physical strength would prevent his ability to subdue prisoners. At his lowest point, he said, he contemplated suicide.

He gave up on chemotherapy treatments because he thought they weren’t helping. It was Chippeaux-Kammerer who convinced him to resume the treatment; she even scheduled the appointment for him. Hartman has since finished those treatments and now primarily takes medications to combat the various symptoms of the disease.

After dealing with lupus for the past 10 years, Castillo has yet to get her disease into remission. She was first diagnosed with it while pregnant with her second child and couldn’t move to even dress or bathe herself. When she had her baby, she couldn’t hold or bathe her son, nor could she comb her older daughter’s hair.

She’s lost track of how many surgeries, hospitalizations and painful symptoms she’s dealt with, Castillo said. At one point, she was taking 109 pills a day to manage her disease. Now that’s down to 32 pills. The 33-year-old Newton resident suffered a setback when her husband died this summer, and says she is again battling fatigue.

Family members are also welcome at the support group, Chippeaux-Kammerer said. Before she married her husband, whom she met shortly after her diagnosis, she had him learn all he could about the disease.

“I wanted to make sure he knew what he was in for,” she said.

This story was originally published November 27, 2015 at 3:59 PM with the headline "Support group helps ease pain for Wichita lupus sufferers."