Longtime Lawrence resident coping with life-threatening 'hardening' disease
- on November 24, 2010
Her body is hardening from her toes to her jaw. The skin on her arms feels like a plastic doll’s arm.
She can’t open the lid on a milk jug. She can’t eat a sandwich without first squishing it down. She can’t get a cracker out of a box because the packaging hurts her skin.
“When I talk about it, I feel like I am making up stories, it sounds so bizarre,” said Kim Banning-Bohmann, 50, of Lawrence. “It’s like some horror story.”
After months of testing, she was finally diagnosed with scleroderma. It’s a life-threatening disease with no known cause.
It can affect the internal organs, including the kidneys, heart and lungs. The disease recently moved into Kim’s esophagus making it hard for her to swallow.
Kim said the first symptoms — a pain and tingling in her hands — began in October 2009. At first, doctors thought she had carpal tunnel syndrome, although her hands were swollen which is an atypical symptom.
On Dec. 1, she had surgery on her right hand. After three weeks, there was no reduction in the swelling of her hands, and her feet and ankles started to swell. She was referred to Barnes-Jewish Hospital in St. Louis, where they gave her the diagnosis.
“It was devastating,” Kim said, sitting in the living room of her home with tears rolling down her cheeks. “They told me, ‘There’s nothing we can do to help you with your symptoms. There’s no cure. There’s no medicines. There’s nothing.’”
In May, she tried a two-week homeopathic program in Wichita. It made her feel better at the time, but there were no lasting effects.
Dr. Richard Burt, chief of immunotherapy for autoimmune diseases at Northwestern Memorial Hospital and associate professor of medicine at Northwestern University’s Feinberg School of Medicine, said the procedure is still in the trial stages, so he couldn’t divulge much information. So far, he said the results have been promising.
Burt said the transplant has been successful in reversing symptoms in the skin, so normal elasticity returns, and muscle function. It also can improve internal organ functions.
Kim met a woman who had the procedure and it reversed her symptoms. The only sign of her illness was that her fingers were a little bent, but she could use them.
“She told me the muscle pain disappeared almost immediately,” Kim said. “So, yes. I’ve got great hopes that I will get some sort of relief like that.”
Kim is on pain medication. She also has Raynaud’s disease, which causes her to feel numb and cold. It’s a typical condition that accompanies scleroderma.
“Everything hurts,” she said. “The only thing that doesn’t hurt is to breath. If I move a finger, I am in pain and my hands are the worst. You don’t realize how much you use your hands until they hurt.”
Kim and her husband, Glenn Bohmann, own Bohmann Excavating and rental property. She used to manage the rental properties and run the excavating company office, but had to hire a bookkeeper.
“It’s really hard to accept help,” she said. “Like everybody else, I am the one who is usually helping and volunteering. It’s just difficult to be on the other side of the coin.”
She has three children, ages 25, 18, and 8, and two stepchildren, ages 23 and 21. She cried as she talked about how her youngest son had to help her get dressed sometimes.
“Every day, I wake up and think this is the day that I would just like to give up and just go to bed and say, ‘Somebody take care of me,’” she said.
But, she’s not giving up.
Heading to Chicago
Kim plans to begin the process for the transplant in January. There will be about two weeks of more testing. Then, there will be a two-day inpatient procedure to collect her stem cells. About two weeks later, she will have the transplant, which requires at least a month in the hospital.
Burt said the only thing that would keep her from having the transplant is if the disease has affected her heart, because then it’s too risky.
There are varying types of scleroderma, but Kim has the severe, rapidly progressive type, which is uncommon. These patients might have a 50 percent chance of a five-year survival. About 300,000 people have scleroderma, and 80,000 have the progressive form.
Kim said she can feel progression.
“I literally can almost feel that I get worse daily. I get more hard and more immobile. Things that people can’t see, but I can feel it.
“I just wonder what morning I am going to wake up and not being able to move at all.”
Lawrence resident Kim Banning-Bohmann has Scleroderma. It’s a chronic autoimmune disease that causes hardening of skin.
She plans to undergo an autologous stem cell transplant in January at Northwestern Memorial Hospital in Chicago. To help pay for her medical costs and living expenses, her church is accepting donations, and her friends are having two fundraisers.
Here’s how you can help:
• Mail tax-deductible monetary donations to: St. Margaret’s Episcopal Church, 5700 W. Sixth St., 66049. In the memo, write Kim’s Cause.
• Order a “Kim’s Cause” T-shirt for $15.
• Attend a fundraising event for $75. It will be from 7 p.m. to midnight Dec. 3 at the church. There will be live music, food, wine tasting, massages, drawing for donated prizes and a silent auction.
To buy a T-shirt or ticket, contact Gina Vervynck at 766-9158 or firstname.lastname@example.org or Angie Rexroad at 550-0558 or email@example.com. They are still seeking donations of food and prizes for the fundraising event.