Three Kokomo families affected by a rare nerve disease are fighting to raise awareness.
Through the efforts of Renata Sharp, Kokomo Mayor Greg Goodnight and Gov. Mitch Daniels have signed proclamations dedicated to Multiple System Atrophy, or MSA. She intends to contact President Barack Obama.
As a result of this rare condition, the Kokomo families have become a closely knit family, providing support to each other.
Sharp’s husband, Tom, died in September 2010 from MSA. Through a blog concerning the disease, Chris Markiewicz, who was diagnosed with MSA eight year ago, connected with Sharp.
After a story appeared last year in the Kokomo Tribune, Francie Hutton, who’s husband Dewayne died of MSA last October, also made contact with Sharp.
The three gather periodically for lunch and keep in constant contact.
MSA impairs the autonomic nervous system, which regulates many of the body’s automatic functions. The degenerative disease affects one person in 100,000, but it has struck three Kokomo families.
MSA causes symptoms similar to Parkinson’s disease, but patients with MSA have more widespread damage to controls for important vital functions, such as heart rate, blood pressure and sweating, according to the National Center for Biotechnology Information website.
Goodnight has issued a proclamation designating next week “Multiple System Atrophy Awareness Week.”
Gov. Mitch Daniels has designed March 12 through the 16th “Multiple System Atrophy Awareness Week” in the state.
Sharp said work on securing the two proclamations started in January.
“It was a very easy process,” she said. “I had a copy of another proclamation and used it as a guide.”
Sharp said she talked to Goodnight, and he asked a lot of questions about MSA.
“It was a surprise to me,” Markiewicz said of the two proclamations. “It was all Renata.”
Markiewicz called Sharp the group’s lobbyist.
“When she told me about the city proclamation and that she was working on the governor, it was a shock to me,” he said.
The three Kokomo residents want to raise awareness of MSA among people and doctors.
The three families are the only ones impacted by MSA in Howard County.
Sharp said she has talked with a woman in Brazil, who’s husband has MSA.
Markiewicz said there is a support group in Chicago that meets monthly, but because of his health can’t make the trip.
“We’re our own support group,” he said.
Hutton said knowing Sharp and Markiewicz helped while her husband was suffering with the disease.
“Chris came to the viewing and his family sent flowers, that meant so much,” she said.
“We’re trying to reach out to people and doctors,” Hutton continued.
Markiewicz, who said his health is about the same as a year ago, is looking forward to riding his motorcycle.
“It’s 100 percent fatal,” he said. “There is no cure. I pray for everyone who has it. Unlike other things, MSA has no boundaries.”
Currently there is no federal funding available for research into the cause of MSA or to find a cure. The Mayo Clinic and Vanderbilt University are doing some research.
Hutton said her late husband was treated for several different medical problems, but wasn’t diagnosed with MSA until after seeing a neurologist.
“Doctors can’t see the big picture,” she said. “They treat the isolated symptoms.”
Sharp said she will attempt to have similar proclamations issued in 2013 by the mayor and governor to continue to raise awareness of MSA.
• Ken de la Bastide is the Kokomo Tribune enterprise editor. He can be reached at 765-454-8580 or via e-mail at ken.delabastide@ kokomotribune.com
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