Although the Sawyer, N.D., woman hopes the therapy will work, she and her mother also are working to raise money to help her travel to Chicago for a stem-cell transplant, if her doctors prescribe the treatment.

Schneider is battling mixed connective tissue disease, a complex autoimmune illness combining symptoms of systemic Lupus and scleroderma. Lupus is a chronic inflammation of the skin and organs; scleroderma thickens and hardens skin and organs.

Doctors have been unable to halt progression of the disease, which was diagnosed in fall 2003, just as she was about to graduate from a cosmetology school in Minot, N.D., at age 28.

Since then, Schneider’s condition has declined markedly. Last fall, she had to stop treatments of Rituximab, a drug originally used to treat cancer, because she couldn’t tolerate the side effects.

Now she is on another drug, cyclosporine, but it is too early to determine whether the treatment will help.

Dr. James Carpenter, a rheumatologist at Fargo’s MeritCare, said it generally takes about four months to determine whether the drug is effective. Schneider has at least two more months of waiting.

If cyclosporine doesn’t provide relief, her next hope would be an expensive treatment to harvest her own stem cells.

“I’m still trying to raise money for the stem-cell,” Schneider said. “Nobody has canceled that idea.”

Last year, Schneider traveled to Chicago, where specialists at Northwestern Memorial Hospital determined she was a candidate for a stem-cell transplant.

Last fall, North Dakota Medicaid officials offered reimbursement for the procedure – which normally costs $150,000 for hospital coverage alone – that was $21,000 short of what the medical center could accept as a minimum payment.

Maggie Anderson, the official who oversees Medicaid in North Dakota, said recently that the state still is trying to work out a payment agreement with Northwestern if doctors recommend a stem-cell transplant treatment.

Still, Schneider said Northwestern has informed her they still haven’t come to terms with North Dakota Medicaid. The nurse asked her how her fundraising efforts were going.

Benefits in Minot raised $1,800 last year, she said. Much of that money was spent traveling to Chicago for the evaluation.

“I’ve been researching everywhere for how to get funds, how to get support,” she said. “It’s an ongoing battle to raise money.”

With help from her mother, also her primary caregiver, the Lion’s Club in Sawyer, N.D., held a pancake-and-sausage benefit feed last month, raising $600. Supporters now are trying to organize a lutefisk feed to raise more money.

If she requires a transplant, Schneider would have to stay in downtown Chicago, no more than four blocks from the medical center, for four to six months. Rents in that neighborhood, she said, run $3,000 a month for a one-bedroom apartment.

Meanwhile, Schneider will continue to take her cyclosporine in the hope she’ll show positive results. The drug can cause high-blood pressure and kidney damage

Readers can reach Forum reporter Patrick Springer at (701) 241-5522



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