 "Photo:")
 "Photo:")
When Sharron Kisner began to lose the use of her legs in November 2002, no one knew why. She was only in her late 50s, yet was losing her strength at an alarming rate. Kisner fell at work and at home, eventually breaking her ankle and landing in the hospital. Doctors were unable to diagnose the problem even as her legs became paralyzed and her upper body lost much of its strength.
"One day I could walk, then it seemed the next I couldn't," Kisner said. "It was all in about a week-long period."
It was not until February 2003 that doctors at the Ohio State Medical Clinic were able to diagnose Kisner with a rare nerve disorder known as chronic inflammatory demyelinating polyradiculoneuropathy.
CIDP affects only two people in every million, said Karl Kisner, Sharron's son and an OSU alumnus. Because it is so uncommon, research for CIDP is scarce.
However, earlier this month the OSU Medical Center, along with Karl Kisner, announced the establishment of the Sharron L. Kisner Endowment for CIDP Research with the goal of learning more about the disease and eventually finding a cure. The money will be used to support basic and clinical CIDP research. More immediately, it will go to support Dr. Stephen Kolb's studies on the molecular level of CIDP.
"Over the past four years, I've learned how devastating this disorder is for patients with the disease and their families," Karl Kisner said.
He said he was inspired to take the lead in founding the endowment after seeing his mother's struggle and the lack of treatment options available.
"I've always been a supporter of the university," Karl Kisner said. "I bought into Woody Hayes' (philosophy) of paying forward. Here's an area where OSU helped my family out, so here I am. It's a great opportunity to tie is all together."
He began the process of raising money for the now $31,000 endowment by contacting business friends and associates, and sending out press releases. The list of donors includes two Major League Baseball teams - the Tampa Bay Devil Rays and the Atlanta Braves.
"When someone knows someone personally, it helps," said Karl Kisner, referring to his business friends and associates. "That's what makes it so strong with Ohio State. People aren't giving money to me, they're giving money to a cause associated with a school they feel comfortable with."
"This (research) needs some help because not many people know about it; it doesn't have 'sex appeal,'" he said.
"We hope this will serve as a starting point for future growth in this area," said Dr. John Kissel, professor of neurology and pediatrics and the director of the Neuromuscular Division at OSU. Kissel helped diagnose Sharron Kisner in 2003, and is leading the CIDP clinical research.
"Money is always needed," he said. "Actually, each round of testing new drugs takes millions of dollars. (But) we think this is the beginning of bigger things for both basic CIDP research and clinical CIDP research. Hopefully this will inspire future patients and families affected by CIDP."
Living with CIDP CIDP is a disease in which the immune system attacks the lining of nerves as they exit the spine, said Tom Chelimsky, professor of neurology at Case Western Reserve University. This causes people with the disease to feel incredibly weak, and can even cause numbness in the extremities. Usually the symptoms begin in the legs and spread to the arms. A person will often barely have the strength to stand, and might even need a respirator.
It is hard for Sharron Kisner to remember when the disease was at its worst, during Christmas of 2002.
"I was in a lot of pain, so I was all drugged up," she said. "Everything was very fuzzy."
Her son said he remembers his mother being almost completely paralyzed. They wrapped her toothbrush and eating utensils in foam because she didn't have the strength to hold them alone. His father had to retire and become a full-time caregiver.
"It's really hard when you see your parents go through that," Karl Kisner said. "You think your parents are your strength. You see the impact on the entire family."
Hope for future Current treatment targets the immune system, Chelimsky said. To stop white blood cells from attacking the nerves, doctors might use plasma exchange, intravenous globulin, steroids, or other stronger immune system agents.
Research on CIDP at OSU is ongoing. Kolb is leading basic research, focusing on how the actual nerve fibers are damaged in CIDP. Kissel is leading the clinical CIDP research, focusing on treatment methods and patient care.
Recently, Kissel's team successfully tested a drug called IVIG.
"Before we always used steroids to improve patients' strength, but this worked better with fewer side effects," Kissel said.
Weak in strength, strong at heart Four and a half years after the initial diagnosis, Sharron Kisner's CIDP is in remission. She is still confined to a wheelchair, but with treatment (including the new IVIG drug), physical therapy, and her family's support, she has regained much of her upper body strength.
"Without (my family) I don't know where I would be," she said. "My grandchildren were so great, they would yell 'Go, Grandma, go' whenever I would stand up."
Still some things will never be the same. Karl Kisner said he can remember taking his mother to a store a few years ago in a wheelchair.
"My mom was always a shopper who liked to hold things, pick things up, inspect things," he said. "That day, it was so crowded in the store there was no way she was going to be able to shop like that due to the wheelchair and her strength. You could see by the look on her face that it really hit her ... we really take our own abilities for granted."
Sharron said she remains confident Kissel and his team will discover a cure soon with the help of her son's endowment.
"I think its wonderful of him," she said. "It's his way of expressing concern for me and future patients."
Mark Miller can be reached at miller.3837@osu.edu.
|
Be the first to comment on this article!