Duluth woman with lupus fights to stay positive

• Kim Schandel and her daughter, Mary Sawin

Kim Schandel (right) and her daughter, Mary Sawin, often walk the family’s three dogs (from left), Honey, Mulder and Chevy, near their home in Duluth’s Lakeside neighborhood. Schandel has been diagnosed with lupus; her daughter shows symptoms of lupus. (Bob King / rking@duluthnews.com)

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On her best days, Kim Schandel feels sick.

“It’s kind of like having the flu most days,” the Duluth woman said. “But we become so used to it that we can function.”

The bad days have included interrupted pregnancies, dramatic and frightening weight loss, an operation for an inflamed hip, memory lapses, an operation the day after Christmas last year to have part of her lung removed and, recently, a brief but total loss of eyesight.

“It’s a really crazy disease,” Schandel said matter-of-factly, as if she were discussing an unusual play in a football game.

Schandel, 43, has lupus, a chronic, life-threatening autoimmune disease that can attack any part of the body and leaves its victims fatigued and in constant pain.

Her daughter, Mary Sawin, 15, could have it, too.

Much is unknown about lupus, including the number of people who have it. The Lupus Foundation of America estimates that 1.5 million Americans have it, and 5 million people worldwide. It’s not contagious. There’s a strong genetic link, but it’s believed that something in the environment triggers it, Schandel said.

Anyone at any age can be diagnosed with lupus, but it’s most commonly found in women of childbearing age. Three out of four women who have it have darker skin, such as Africans and Asians, Schandel said.

There’s no cure, and Schandel has been treated in ways really intended for other diseases: chemotherapy, prednisone and anti-malarial drugs. But the Food and Drug Administration approved Benlysta as the first lupus drug on March 9, 2011 — Mary’s 14th birthday.

Since then, 40 drugs have gone on clinical trials.

Schandel officially was diagnosed with lupus just last year, although she first was tested for it in the early 1990s when she suffered a sudden weight loss. The symptoms forced her to give up the art-framing shop and art gallery she owned, but she hasn’t allowed it to make her inactive.

Schandel, who has degrees in art and art education, produces the quarterly publication for the Depot’s Railroad Museum, where her husband, Tim Schandel, is curator and director of railroad operations for the North Shore Scenic Railroad. She put together a 170-foot exhibit at the museum. Just last week, she received a Legacy Fund grant to redo the Immigration Room at the Depot.

Besides that, she’s ambassador for the Lupus Foundation of Minnesota. That has entailed radio interviews, appearances at Rochester and Minneapolis Lupus Walks, speaking to doctors and researchers in a seminar at the Mall of America. On Saturday, she’ll be on hand for Duluth’s second Lupus Walk for Hope/5K Walk.

Schandel was chosen because of the enthusiasm she showed as a volunteer last year, and because of the compelling story of a mother and daughter likely fighting the same disease. But she has mixed feelings about the role.

“I didn’t really want to be the ambassador,” she said. “I didn’t want to represent lupus. I hate lupus.”

Dealing with lupus is bad. The thought of her daughter facing the same thing is worse.

“I see all her crazy blood work and her symptoms … and hospitalizations, and that scares me far more than dealing with it myself,” she said.

Mary has been diagnosed with an autoimmune disease that’s probably lupus. She has been hospitalized for ulcers in her throat and digestive system and has had numerous bouts with pneumonia.

The Marshall School sophomore said she doesn’t feel the aching pain her mother feels, but she does deal with the tiredness. Her doctor wrote a note allowing her to go to school an hour late. This year, that’s practical on the days she starts with a study hall but not when her day starts with Algebra II. Mary said her friends don’t always understand her illness, but her teachers have been understanding and helpful. Because her immune function doesn’t function well, going to the nurse’s office when she’s overly tired isn’t a good option. So last year a biology teacher emptied out a large closet and installed a papasan chair, inviting Mary to go there to rest whenever she needs to.

But Mary hasn’t allowed the illness to defeat her. Taking after her mom, a former long-distance runner, Mary runs on Marshall’s cross-country team. She teaches Sunday school at First Lutheran Church. During the summer, she volunteered at the Chester Bowl day camp, wearing a visor and sun screen, because ultraviolet rays trigger lupus symptoms.

“We try to ignore it,” Mary said of the attitude she and her mom take about the disease. “It’s a mental game.”

It’s the approach Schandel models.

“You have to stay above it as best you can,” she said. “It’s one area that I try to put as much emphasis on as I can, always trying to find the grace in everything around you and trying to stay as normal and active as you can while you can.”

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