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.

Tagged: scleroderma, kim banning-bohmann, funeral

Comments

Rick Aldrich 1 year, 10 months ago

Lawrence and her family lost a very strong willed person. I've been following this story on LJ World and am saddened to hear of the loss. my prayers are with all her friends and family members.

0

christy kennedy 1 year, 10 months ago

This is heartbreaking news. Condolences to all of her family and friends.

This is not the time, however, I feel compelled to note that the author does readers a disservice by stating equivocally that, "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."

I know nothing about Kim Banning-Bohmann's dx or treatment, but anyone reading this who suffers from any autoimmune disorder should do a simple search for their particular symptoms + "gluten." A search for "Scleroderma" or "autoimmune disorders" + "gluten" yields many, many results, including, from SCLERO.ORG, the nonprofit International Scleroderma Network:

"Gluten sensitivity and Celiac disease are a known or suspected cause of scleroderma and dozens of other autoimmune diseases. Even if tests for gluten sensitivity and Celia disease are negative or inconclusive, trial of a gluten-free and casein-free (GFCF) should be considered. (Also see Diagnosis of Gluten Sensivity and Celiac Disease, What is Scleroderma?, and Types of Scleroderma)." And there's much, much more.

1

wfeltman 1 year, 10 months ago

You can go on the internet and find quite a large number of supposed "causes" of scleroderma that have not been proved or disproved by the medical community. Kim and her doctors were well aware of the tentative connection between gluten sensitivity and autoimmune disease and Kim was on a gluten-free diet for well over a year before she passed. It had no positive effect that we could see. In fact the progress of the disease accelerated during that period. It probably can't hurt to go to a gluten-free diet, but do not expect any miracle cure. Wayne Feltman

1

christy kennedy 1 year, 10 months ago

This is why I said this wasn't really the time . . . and that I didn't know anything about her treatment. I just know that many people who recently diagnosed with autoimmune disorders can be diverted from possibly helpful information by statements like "no known cause or treatment" when for some, at earlier stages, there are indeed things that can make a big difference.

0

wfeltman 1 year, 10 months ago

I would like to clarify that the autologous blood stem cell transplant Kim underwent in Chicago proved successful for a good number of the other study participants. This treatment, though risky and expensive, seems to offer the best option for scleroderma patients so far, and can lead to a reversal of the symptoms. Unfortunately, it did not help Kim, and the stress of the procedure may even have accelerated the disease. She understood the risks. As her big brother, I can tell you Kim was not the kind of person to take adversity lying down. We are all very grateful to the community that made it possible for her to get the treatment, despite the disappointing outcome. Much better to try and fail than not try at all. Wayne Feltman

1

dougfirst 1 year, 10 months ago

Kim was a wonderful, kind soul. I have known her since high school and she was a few years older than me. In high school, you think it's cool when the upperclassmen speak to you. She was always so nice and just a great person. My thoughts are with the family during this very difficult time. God Bless all of you!!

0

Commenting has been disabled for this item.