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Wednesday, October 1, 2014

Spreading awareness of obscure but deadly disease

By Shant Shahrigian
Posted

Kingsbridge resident Kim Brown has suffered from ataxia for more than a decade. The neurological condition hinders balance, fine motor functions and speech. The condition can lead to death, although statistics about the survival rate of patients are not available.

Ms. Brown says some of her friends in the Northwest Bronx who have the same condition have stopped going out in public, since the symptoms of their disease are often mistaken for intoxication.

That is one reason the former pharmacist’s assistant is working to spread the word about ataxia.

“I’m trying to get the awareness out,” Ms. Brown, 37, said on a recent morning at her apartment. “There’s every other disease out there, and people don’t know about ataxia.”

Ms. Brown’s efforts have drawn state, city and borough proclamations recognizing International Ataxia Awareness Day, which is annually acknowledged on Sept. 25.

An estimated 150,000 people in the U.S. live with the condition, according to the National Ataxia Foundation. 

Depending on the severity, a diagnosis of the disease is potentially shattering.

In Ms. Brown’s case, doctors gave her six months to live after her diagnosis in early 2000.

But Michael Parent, Executive Director of the National Ataxia Foundation, said ataxia diagnoses have improved in recent years.  “I think the medical community is getting a better handle on ataxia, though many folks may go through a long process determining what they have,” he said during a phone interview.

Mr. Parent attributed improved diagnoses to the advent of genetic testing that can detect hereditary ataxia, as well as his own organization’s efforts to spread the word at medical conferences and other venues.

Doctors advised Ms. Brown to avoid childbirth, saying her weakened muscles could not support childbirth. But after a difficult pregnancy that included several premature labors which physicians halted, Ms. Brown give birth to her son, Kendall, in 2003.

“They’re what I live for, my husband and my son,” Ms. Brown said. “They’re the reason I get up every day.”

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