Posts tagged with Scleroderma

Resident dies after battling rare disease

BY PETER HANCOCK

Kim Banning-Bohmann takes a break from flipping through a clothing magazine Tuesday, Nov. 1, 2011, in her rural Lawrence home. Banning-Bohmann died Monday after a long battle with a rare disease, scleroderma.

Kim Banning-Bohmann takes a break from flipping through a clothing magazine Tuesday, Nov. 1, 2011, in her rural Lawrence home. Banning-Bohmann died Monday after a long battle with a rare disease, scleroderma. by MeaganMThomas

Kim Banning-Bohmann is being remembered more for how she lived than for how she died.

“For me, it was just the connection we had as sisters,” Karin Feltman, of Lawrence, said.

Kim’s younger sister laughed openly as she recalled their relationship. “I always said that I could hear her face, meaning we could just give each other a look and know what each other was thinking. That caused us some trouble sometimes, like it would make us laugh at inappropriate moments. It was particularly bad at church because I would be up front singing, facing everyone, and she would be looking at me from the congregation, and I could just hear her face.”

Banning-Bohmann died Monday after a long battle with a rare disease, scleroderma. She was 52.

Scleroderma is defined as a group of rare, progressive diseases that involve the hardening and tightening of the skin and connective tissues. It has no known cause or cure.

Last year, Banning-Bohmann began experimental stem cell therapy at Northwestern Memorial Hospital in Chicago. Her battle with the disease was documented in a series of stories in the Journal-World in 2010 and 2011.

“She was a pretty lively gal,” said Mike McGrew, a longtime friend and high school classmate. “She had lots of energy, lots of friends, had a very strong personality and strong will. That’s why it’s even more disconcerting when someone who had that strength of character is overcome by something as rare as this is.”

Banning-Bohmann was a 1978 graduate of Lawrence High School. At St. Margaret’s Episcopal Church, she and Feltman helped coordinate the Family Promise program, which provides shelter in area churches for homeless families.

Banning-Bohmann is survived by her husband, Glenn Bohmann; her children, Blake Bohmann, Brett Bohmann, Ryan Banning, Morgan Banning and Cameron Bohmann; siblings Donna Passero, of California, Wayne Feltman and Jack Daniel, both of Texas, and Karin Feltman; and her father, Harry Feltman. She was preceded in death by her mother, Sonia Stofkooper.

Services will be at 2 p.m. Sunday at St. Margaret’s Episcopal Church, 5700 W. Sixth St.

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Lawrence resident’s condition worsens after stem cell transplant for ‘hardening’ disease

Editor's Note: This is a followup story. We first reported about Kim and her battle in November 2010.

Longtime Lawrence resident Kim Banning-Bohmann, 51, is in the fight of her life.

She has a rare and progressive disease called scleroderma that has caused her body to harden from her toes to her jaw. She said it hurts to walk, sit, sleep and eat.

“It’s worsening. I’m much sicker,” Kim said, during an hourlong interview this week at her home.

• • •

Kim’s fight began two years ago when the first symptoms of the disease — a pain and tingling in her hands — began to surface.

After trips to numerous doctors and hospitals, she received the devastating diagnosis in spring 2009. There’s no known cause or cure, but there is hope.

Northwestern Memorial Hospital in Chicago has been performing stem cell transplants on individuals with scleroderma through a clinical trial that began in 2006 and the results have been promising.

Dr. Richard Burt, chief of immunotherapy for autoimmune diseases, said during an interview with the Lawrence Journal-World last year that the transplant has been successful in reversing symptoms in the skin, so normal elasticity and muscle function return. It also can improve internal organ functions.

So far, Kim is the only person who hasn’t seen the promising results.

“I don’t think I’m going to be that one person that it doesn’t work for. I don’t think I am,” she said. “I just think I’ve had these other issues that no one else had.”

•••

On Feb. 28, Kim had a stem cell transplant in Chicago after a month of preparation that including grueling chemotherapy treatments.

Kim said the chemo and transplant were a piece of cake compared to the infection she battled after the transplant. The infection caused her blood pressure to drop and her kidneys to quit working. As a result, she gained 38 pounds of fluid in four days and some of it went to her lungs. She said the fluid went to such weird places that she could barely look at herself in the mirror.

“I looked like a horror picture,” she said. “That is the worst thing that I’ve ever gone through in my life is that infection. It was a feat to even walk to the bathroom.”

While in the hospital, she also vomited “a bowlful of blood” in one day. Doctors discovered she had lesions on her stomach called gastric antral vascular ectasia, or GAVE.

After a month in the Chicago hospital, she returned home in mid-March.

“It was just so good to be home,” she said. “I just needed to be home.”

Since then, she’s been dealing with the stomach lesions. She’s had her blood drawn every week to two weeks. She’s had blood transfusions and procedures where they cauterize her stomach. Because her veins have hardened, they’ve had to put a port in her chest.

Last week, she finally received some good news. Her doctor at Kansas University Hospital saw no signs of bleeding and her hemoglobin has reached its highest level since the transplant.

“I’m kind of hoping I’ve gone through everything I need to … knock on wood,” she said.

•••

Now, she’s praying to see improvement in the scleroderma.

She said a gentleman from Hawaii had a stem cell transplant on the same day that she did. They became fast friends and keep in touch by email. He recently wrote that he’s training for a marathon in June and is raising money to fight the disease.

Meanwhile, for her, the disease has worsened.

It takes about an hour for her to get dressed each day because of the immobility in her hands and the ulcers on her fingers.

“It’s not comfortable to sit for too long because my legs get locked up,” she said.

Kim tries to lead as normal of a life as possible. She still attends her children’s activities, drives, works from home, buys groceries and hangs out with her girlfriends.

“I’m still doing the same things; it just takes longer and it hurts a lot more,” she said.

She was in Chicago about two weeks ago for a follow-up appointment, and the doctor told her that he thinks her new stem cells have been fighting the stomach ulcers instead of the scleroderma. He still believes the transplant is going to work. He hasn’t given up hope and neither has she.

“This whole thing has given me an insight into what’s important in life and what’s not. I think this happened for a reason. I think I needed a wake-up call about what’s really important in life and what’s not,” she said and paused fighting back tears. “Family, your health — everything else is just gravy.”

Kim Banning-Bohmann takes a break from flipping through a clothing magazine Tuesday, Nov. 1, 2011, in her rural Lawrence home. Banning-Bohmann was looking for a coat that she might be able to button with her hands which have hardened and have sores. The 51-year-old resident was diagnosed in spring 2010 with scleroderma, a life-threatening disease that causes hardening of the skin. She received a stem cell transplant in February in hopes of reversing the symptoms. It has yet to work, but she hasn't given up hope..

Kim Banning-Bohmann takes a break from flipping through a clothing magazine Tuesday, Nov. 1, 2011, in her rural Lawrence home. Banning-Bohmann was looking for a coat that she might be able to button with her hands which have hardened and have sores. The 51-year-old resident was diagnosed in spring 2010 with scleroderma, a life-threatening disease that causes hardening of the skin. She received a stem cell transplant in February in hopes of reversing the symptoms. It has yet to work, but she hasn't given up hope.. by Richard Gwin


PREVIOUS STORIES

Here are stories that have been published about Kim:

Longtime Lawrence resident coping with life-threatening 'hardening' disease.

Lawrence resident overwhelmed by community support as she fights 'hardening disease.'

Locks of love: Younger sister donates hair for wig.

Lawrence resident to undergo stem cell transplant for 'hardening disease.'

Longtime Lawrence resident Kim Banning-Bohmann talks about her diagnosis of scleroderma, a life-threatening illness, during an interview in November 2010. The disease not only hardens skin, but it can also affect internal organs.

Longtime Lawrence resident Kim Banning-Bohmann talks about her diagnosis of scleroderma, a life-threatening illness, during an interview in November 2010. The disease not only hardens skin, but it can also affect internal organs. by Richard Gwin

Kim Banning-Bohmann cries as she gets her hair shaved off by a stylist Tuesday, Feb. 15, 2011, in Lawrence. Banning-Bohmann, who has scleroderma, also known as the hardening disease, is undergoing a process to have a stem cell transplant, and that process includes chemotherapy.

Kim Banning-Bohmann cries as she gets her hair shaved off by a stylist Tuesday, Feb. 15, 2011, in Lawrence. Banning-Bohmann, who has scleroderma, also known as the hardening disease, is undergoing a process to have a stem cell transplant, and that process includes chemotherapy.

Kim Banning-Bohmann, 50, Lawrence, is sporting a hat and new wig that contains donated hair from her younger sister, Karin Feltman, and two other donors. She had her hair shaved off Tuesday, Feb. 15, 2011, because it was falling out due to chemotherapy. Banning-Bohmann has scleroderma, also known as the hardening disease. She is undergoing a process to have a stem cell transplant Feb. 28 at Northwestern Memorial Hospital in Chicago.

Kim Banning-Bohmann, 50, Lawrence, is sporting a hat and new wig that contains donated hair from her younger sister, Karin Feltman, and two other donors. She had her hair shaved off Tuesday, Feb. 15, 2011, because it was falling out due to chemotherapy. Banning-Bohmann has scleroderma, also known as the hardening disease. She is undergoing a process to have a stem cell transplant Feb. 28 at Northwestern Memorial Hospital in Chicago.

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Lawrence resident to undergo stem cell transplant for ‘hardening disease’

Kim Banning-Bohmann, 50, Lawrence, is sporting a hat and new wig that contains donated hair from her younger sister, Karin Feltman, and two other donors. She had her hair shaved off Tuesday, Feb. 15, 2011, because it was falling out due to chemotherapy. Banning-Bohmann has scleroderma, also known as the hardening disease. She is undergoing a process to have a stem cell transplant Feb. 28 at Northwestern Memorial Hospital in Chicago.

Kim Banning-Bohmann, 50, Lawrence, is sporting a hat and new wig that contains donated hair from her younger sister, Karin Feltman, and two other donors. She had her hair shaved off Tuesday, Feb. 15, 2011, because it was falling out due to chemotherapy. Banning-Bohmann has scleroderma, also known as the hardening disease. She is undergoing a process to have a stem cell transplant Feb. 28 at Northwestern Memorial Hospital in Chicago.

Lawrence resident Kim Banning-Bohmann was diagnosed with scleroderma, a life-threatening disease that causes hardening of the skin, about one year ago.

By fall, Kim’s body was hardening from her toes to her jaw. Her arms felt like a plastic doll’s arm. The disease also had moved into her esophagus, making it hard to swallow.

There is no known cause or cure for scleroderma, but there is treatment.

In mid-January, Kim, 50, began the process to have a stem cell transplant at Northwestern Memorial Hospital in Chicago. The procedure for scleroderma is still in the trial stages, but the results have been promising.

Kim is renting an apartment about five blocks from the hospital, and friends have been taking turns spending time with her — about a week at a time.

On Jan. 31, she had her first chemotherapy treatment, and then she endured daily injections of Neupogen to help accelerate stem cell growth. On Feb. 10, her stems cells were harvested during a four-hour procedure where she was hooked up to a machine by a catheter through her neck. Doctors wanted to harvest 2 million stem cells, and they got 7 million.

“That was a good thing because I didn’t have to do it for a second day,” Kim said.

She returned home Feb. 12 to spend a week with family and friends and celebrate her wedding anniversary.

“I am just a lot more tired and don’t have the stamina that I had before, which is really hard for me because I’ve always been someone who is kind of like the Energizer bunny — even kind of with this disease. But, now it’s just wiping me out,” she said.

Kim said her most difficult day was Monday when she reached up to do her hair and it started coming out in handfuls. On Tuesday, she had her stylist shave it off.

“It honestly was the hardest thing I’ve done so far. With all of the catheters, all of the needles — that was the worst thing. I mean I just sat there and sobbed,” she said.

Kim Banning-Bohmann cries as she gets her hair shaved off by a stylist Tuesday, Feb. 15, 2011, in Lawrence. Banning-Bohmann, who has scleroderma, also known as the hardening disease, is undergoing a process to have a stem cell transplant, and that process includes chemotherapy.

Kim Banning-Bohmann cries as she gets her hair shaved off by a stylist Tuesday, Feb. 15, 2011, in Lawrence. Banning-Bohmann, who has scleroderma, also known as the hardening disease, is undergoing a process to have a stem cell transplant, and that process includes chemotherapy.

Kim Banning-Bohmann

Kim Banning-Bohmann

Now, when she goes out, she sports a wig that contains hair from her younger sister, Karin Feltman, and two other donors, and a hat.

Kim leaves for Chicago Monday and is facing five days of chemotherapy, followed by the stem cell transplant on Feb. 28. She expects to come home between March 8 and March 15, if all goes well.

She has met a Marine who is stationed in Hawaii who is going through the process at the same time. They’ve become fast friends and compare notes on how they are feeling. He lost his wife five years ago to breast cancer, and they have two children.

“You think you have it rough and then you hear other people’s stories,” she said. “I can’t imagine going through what he went through.”

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Health beat: Autism-vaccine link a fraud, Kim’s CaringBridge, stalking awareness

Here’s a dose of health news from WellCommons, around town and elsewhere:

LINK BETWEEN AUTISM AND VACCINE 'ELABORATE FRAUD'

In an editorial published Wednesday, the British Medical Journal declared the 1998 study by Andrew Wakefield that implied a link between the MMR vaccine and autism “an elaborate fraud.”

The study already has been retracted by 10 of Wakefield's co-authors.

Dr. Fiona Godlee, BMJ editor in chief, says, “The MMR scare was based not on bad science but on a deliberate fraud” and that such “clear evidence of falsification of data should now close the door on this damaging vaccine scare.”

A series of three articles in the BMJ starting this week reveal the true extent of the scam behind the scare. The series is based on interviews, documents and data, collected during seven years of inquiries by investigative journalist Brian Deer.

Dr. Stephen Lauer, vice chairman of pediatrics at Kansas University Hospital.

Dr. Stephen Lauer, vice chairman of pediatrics at Kansas University Hospital.

In response to the editorial, Dr. Stephen Lauer, vice chairman of pediatrics at Kansas University Hospital, had this to say:

“One of the great frustrations in pediatric medicine today is the reluctance of parents to vaccinate their children against a variety of deadly diseases. Much of this resistance stems directly from Dr. Wakefield's paper and subsequent work on his part maintaining a tie between the MMR vaccine and autism.

“The fact that this work was not just wrong but fraudulent makes the situation even worse. In many cases, concerned but misled parents have declined to vaccinate their children against measles  - a disease that kills at least 150,000 children worldwide - as well as numerous other diseases. The recent increase in deaths from pertussis in California is another example of completely preventable deaths linked to the decline in vaccination rates.  

“Study after study in numerous countries involving hundreds of thousands of children have never shown any link between autism and any vaccination. That Dr. Wakefield's lies have led to increased illness and deaths among innocent infants and children is a social and medical disaster.”


KIM'S PAGE ON CARINGBRIDGE SITE

Lawrence resident Kim Banning-Bohmann - who has scleroderma, also known as the “hardening disease - now has a CaringBridge web site. (We first published her story on WellCommons in late November.)

To visit, click on CaringBridge.org. The name prompt is kimbanningbohmann.

Kim said her friend Jen Nelson set up the page for her.   She will be leaving Jan. 14 for Northwestern Memorial Hospital in Chicago, where she will undergo an autologous stem cell transplant. Doctors expect she will be able to return home March 14.

While in Chicago, friends and family will be with Kim and updating her CaringBridge page.

“I feel it (the site) will be a wonderful way for me to feel connected to all my loved ones while being gone for such a long time,” she said in an e-mail.


STALKING AWARENESS

January is National Stalking Awareness Month.   In Kansas in 2009:

• 820 incidents of stalking were reported to law enforcement.

• 4,756 protection from stalking orders were filed in courts.

“We know that for every victim who reports to law enforcement or who seeks a protection order, there are countless others who aren’t coming forward. We encourage communities to work together to provide support for victims, to hold offenders accountable and to prevent future tragedies.”

— Joyce Grover, executive director of the Kansas Coalition Against Sexual and Domestic Violence

Nationally:

• In one out of five cases, stalkers used weapons to harm or threaten victims.

• In 76 percent of female homicides, the victims were stalked by their partner prior to their murder.  

• In 89 percent of female homicides, the victims had been both physically assaulted and stalked in the 12 months prior to their murder.

• 46 percent of stalking victims experience at least one unwanted contact per week.

• Three out of four victims are stalked by someone they know.

• One in eight employed victims lose time from work.

• One in seven victims relocate as a result of being stalked.

The Kansas Crisis Hotline number is 888-END-ABUSE (888-363-2287).

The KCSDV website includes information about where to find services for survivors. For Douglas County:

GaDuGi Safe Center - 841-2345.

The Willow Domestic Violence Center - 800-770-3030 or 843-3333.

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Health beat: How Kansas measures up, sisterly love, KU Hospital’s baby news

Here’s a dose of health news from around town and elsewhere:

We're No. 23

Kansas moved up one spot to No. 23 in the 2010 America’s Health Rankings. Vermont is No. 1. Mississippi came in last.

Our strengths:

• Low incidence of infectious disease at 6.2 cases per 100,000 people.

• 72.8 percent of pregnant women receive prenatal care during the first trimester.

• 2.9 poor mental days and 3 poor physical health days per month. Poor health days are the average number of days in the previous 30 days that a person could not work or household tasks.

Our challenges:

• Too few primary care physicians — 102.5 per 100,000 people.

• Low public health funding — $47 per person.

• High infant mortality rate — 7.5 deaths per 1,000 live births.

• High occupational fatalities rate — 5.7 deaths per 100,000 workers.


Locks of love

Now, this is sisterly love!

On Saturday afternoon, Karin Feltman, Lawrence, said good-bye to her long, blonde locks. She got a hair cut at Static Hair Salon and donated it for a wig for her older sister Kim Banning-Bohmann, who will lose her hair during chemotherapy.

Kim has scleroderma, known as the hardening disease, and will undergo testing, chemotherapy, and a stem cell transplant at Northwestern Memorial Hospital in Chicago. The process is scheduled to begin Jan. 31.

“I would never cut it without a huge motivator,” Karin said. “It’s nice to know it’s staying in the family. It will just live on someone else’s head, now.”

Karin said a friend of Kim’s is organizing the wig-making.

For more pictures, click here on WellCommons.

Debbie Daneke, of Static Hair Salon, cuts Karin's hair.

Debbie Daneke, of Static Hair Salon, cuts Karin's hair.


Oh baby!

Kansas University Hospital is having an open house 1 p.m. to 3 p.m. Friday to celebrate the renovation of its Labor and Delivery Unit.

The $10 million project features 11 labor, delivery and recovery suites. The suites will be accommodate newer technology like transitional-care nursing, a specialized medical record system and state-of-the-art monitoring for the sickest mothers and fetuses.

“That’s really the best part of the new setup,” said Leigh Collins, nurse manager of Labor/Delivery. “We’ll be able to keep babies and moms together as much as possible in those hours after birth.”

There also are new tile bathrooms with Tuscany-style wall sconces, showers large enough for mothers to sit during labor, earth-tone walls and cabinets that hide medical devices and spectacular views of the Kansas City skyline.

The hospital has about 1,700 births a year.

Know of something happening on the health beat? Send me a tip at kbritt@ljworld.com.

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Locks of love: Younger sister donates hair for wig

Karin Feltman is pictured Saturday, Dec. 11, 2010, before a hair cut. She donated her hair for wig for her older sister.

Karin Feltman is pictured Saturday, Dec. 11, 2010, before a hair cut. She donated her hair for wig for her older sister.

Now, this is sisterly love!

On Saturday afternoon, Karin Feltman, Lawrence, said good-bye to her long, blonde locks. She got a hair cut at Static Hair Salon and donated it for a wig for her older sister Kim Banning-Bohmann, who will lose her hair during chemotherapy.

Kim has scleroderma, known as the hardening disease, and will undergo testing, chemotherapy, and a stem cell transplant at Northwestern Memorial Hospital in Chicago. The process is scheduled to begin Jan. 31.

“I would never cut it without a huge motivator,” Karin said. “It’s nice to know it’s staying in the family. It will just live on someone else’s head, now.”

Karin said a friend of Kim’s is organizing the wig-making.

Measuring up.

Measuring up.

Debbie Daneke, of Static Hair Salon, cuts Karin's hair.

Debbie Daneke, of Static Hair Salon, cuts Karin's hair.

She's all smiles.

She's all smiles.

Karin Feltman has a new hairdo.

Karin Feltman has a new hairdo.

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Lawrence resident overwhelmed by community support as she fights ‘hardening disease’

Longtime Lawrence resident Kim Banning-Bohmann talks about her diagnosis of scleroderma, a life-threatening illness, during an interview in November 2010. The disease not only hardens skin, but it can also affect internal organs.

Longtime Lawrence resident Kim Banning-Bohmann talks about her diagnosis of scleroderma, a life-threatening illness, during an interview in November 2010. The disease not only hardens skin, but it can also affect internal organs. by Richard Gwin

The Lawrence community is rallying around longtime resident Kim Banning-Bohmann, 50, who has scleroderma.

Her story was first featured Nov. 24 on WellCommons.

Scleroderma is a life-threatening disease that causes hardening of skin. 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 plans to undergo an autologous stem cell transplant at Northwestern Memorial Hospital in Chicago. She said her testing begins Jan. 31. She is scheduled to be done with the procedure and back home by mid-March.

To help pay for her medical costs and living expenses while in Chicago, her friends had a fundraising event Dec. 3 at St. Margaret’s Episcopal Church.

Gina Vervynck, one of the organizers, said more than 100 people attended the event, which included live music, food, wine, and massages. They raised $9,672.

Kim attended the event and said through an e-mail Tuesday that it really lifted her spirits. She said she feels about the same physically as she did a month ago, but emotionally she’s excited and overwhelmed by the outpouring of community support.

“The generosity and love I felt that evening was amazing. There were people who attended the event who totally surprised me, and total strangers who told me they wouldn’t miss it — amazing!”

— Kim Banning-Bohmann

Her friends are selling Kim’s Cause T-shirts for $15, and the church is accepting tax-deductible monetary donations.

So far, they’ve raised a total $24,522, which includes the Dec. 3 event.

“This is incredible considering we really just started publicly fundraising only about a month ago,” Vervynck said.

From left are Gina Vervynck, and her daughter Amanda Vervynck, and Angie Rexroad, all of Lawrence. The three are close friends of Kim Banning-Bohmann, who has scleroderma. They have organized a couple of fundraisers to help pay for Kim's medical and living expenses while in Chicago. She plans to have a stem cell transplant at Northwestern Memorial Hospital. The process from testing to recovery is expected to take from late January to mid-March. The trio were pictured Friday, Nov. 19, 2010, at Kim's home.

From left are Gina Vervynck, and her daughter Amanda Vervynck, and Angie Rexroad, all of Lawrence. The three are close friends of Kim Banning-Bohmann, who has scleroderma. They have organized a couple of fundraisers to help pay for Kim's medical and living expenses while in Chicago. She plans to have a stem cell transplant at Northwestern Memorial Hospital. The process from testing to recovery is expected to take from late January to mid-March. The trio were pictured Friday, Nov. 19, 2010, at Kim's home. by Richard Gwin

Here’s how you can still help:

• Mail tax-deductible monetary donations to: St. Margaret’s Episcopal Church, 5700 W. Sixth St., 66049. In the memo, write Kim’s Cause.

• Buy a T-shirt by contacting Gina Vervynck at 766-9158 or gina.vervynck@yahoo.com, or Angie Rexroad at 550-0558 or arexroad@sunflower.com.

• Make a donation through the Give Forward website. A page has been set up for Kim at http://www.giveforward.com/kims-cause.

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Longtime Lawrence resident coping with life-threatening ‘hardening’ disease

Longtime Lawrence resident Kim Banning-Bohmann talks about her diagnosis of scleroderma, a life-threatening illness, during an interview in November 2010. The disease not only hardens skin, but it can also affect internal organs.

Longtime Lawrence resident Kim Banning-Bohmann talks about her diagnosis of scleroderma, a life-threatening illness, during an interview in November 2010. The disease not only hardens skin, but it can also affect internal organs. by Richard Gwin

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.

‘Devastating’ diagnosis

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.

Then, she was referred from Kansas University Medical Center to Northwestern Memorial Hospital in Chicago, where they perform stem cell transplants on individuals with scleroderma.

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.”


KIM'S CAUSE

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 gina.vervynck@yahoo.com or Angie Rexroad at 550-0558 or arexroad@sunflower.com. They are still seeking donations of food and prizes for the fundraising event.

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