Experts Work to Improve Lives of Lupus Patients

Updated: 12/13/2012 10:49 PM KSTP.com By: Naomi Pescovitz

Last month, 23-year-old Sasha McHale, daughter of former Timberwolves coach Kevin McHale, died, while battling the autoimmune disease, lupus. 

While McHale's death has brought attention to the disease, it is an illness millions of Americans struggle with every day.

This Saturday, the Lupus Foundation of Minnesota is hosting a conference in Bloomington. Doctors, researchers and other experts will gather at the Hilton - Minneapolis St. Paul Airport/ Mall of America to talk about the latest treatments and research.

25-year-old Kristie Bauer is the Marketing Coordinator at GovDelivery, a software company in Downtown St. Paul.

"I am very stubborn and I don't take things sitting down," Bauer said.

She's had to make adjustments around her office.

"I keep a heated blanket under my desk, because if my legs are sore, the heat helps," Bauer said.

Bauer is battling lupus. Her body is battling itself.

"Sometimes it's very very hard for me to get out of bed, it's hard for me to do simple things like pick up a glass and walk, and there's times when my husband has had to help me get out of my car at night after work," Bauer said.

Bauer has been living with lupus since she was 17 years old. She is one of 2 million other Americans with the disease. 90 percent are women.

"Young women are sort of the target demographic for this disease," said Dr. Emily Gillespie, Assistant Professor of Medicine at the University of Minnesota. Gillespie's research focuses on autoimmune conditions, primarily lupus.

For people like Bauer, the most debilitating part of the disease are "flare-ups" that come at any time. Gillespie's research is centered around making those symptoms more predictable.

"We are looking for simple tests, blood tests, that might do a good job of alerting somebody that they might be on the verge for a future flare," Gillespie said. 

Bauer not only shares her story with others, she also helps raise money for the Lupus Foundation of Minnesota.

"I used to be really really guarded and not tell anyone and I've gotten really good about sharing my story a little bit more," Bauer said.

The 10 year survival rate for lupus is 90 percent, but 10 percent die from the disease.

"It's important to get awareness out there, it's important to raise money for research, so that we get better drugs and eventually find a cure," Bauer said.
    
Lupus occurs more often in certain ethnic groups. The incidence in Caucasians is approximately one in a thousand. In African-Americans, the incidence is about one in 250. Lupus occurs in about one in 500 Latinos.

Click here for more information about the conference on Saturday. Registration begins at 8 a.m.