Lupus foundation holds awareness walk

Published On:
Monday, November 9, 2009
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More than 400 people participated in the fourth annual Walk for Lupus Now at Tempe’s Kiwanis Park on Sunday to promote Lupus awareness and raise funds for disease research.

The walk, which was put on by the Lupus Foundation of America, raises money to support the Arizona chapter of the foundation, assists members with Lupus and funds research.

The foundation hopes that the walk serves to increase Lupus awareness as well.

Arizona chapter president Crista Kleppe, who has Lupus, said she initially became involved with the foundation to raise visibility.

“Many people we talk to don’t know about our Arizona chapter, “Kleppe said.

Lupus awareness may be low because the virus is known as the “great imitator,” said Steven Hoffman, an associate professor with ASU’s School of Life Sciences.

Hoffman’s research is focused on understanding the psychological implications of the disease.

Lupus, clinically known as systemic Lupus Erythematosus, is a disease that can affect every part of the body including the heart, joints and nervous system. The disease alternates between periods of remission and illness, known as flare-ups.

Diagnosing Lupus becomes difficult because each flare-up may affect a different part of the body. Hoffman said factors such as stress and exposure to sunlight can lead to flare-ups.

There is also a psychological factor, he said. Once the disease attacks the central nervous system, it may alter brain activity and result in episodes of psychosis, which can also be incorrectly diagnosed as psychological problems, he said.

Biochemistry freshman Haleigh Martinez was diagnosed with Lupus when she was 14, and said misdiagnoses are common because of the vagueness of symptoms like fever, joint paint and fatigue.

“Fatigue? I mean, give me a break — everyone is fatigued all of the time,” she said.

Once diagnosed with Lupus, however, Martinez said all of her symptoms made sense and she was able to start different treatments aimed specifically at Lupus.

She stayed active by swimming in high school, which is recommended for Lupus patients because it strengthens the body without impacting the joints.

There is currently no cure for Lupus, and the most common treatments for it are immunosuppressive drugs. This is because the disease works by resembling a person’s own body cells, so when the immune system begins to fight the disease, it also attacks the body, Hoffman said.

A person must also have a certain genetic make-up to be susceptible to the disease, and nine out of 10 people diagnosed with Lupus are women, he said.

Martinez became interested in Hoffman’s work on Lupus when she entered ASU, and plans to do some undergraduate research with his group, she said.

“This is a disease that is really prevalent but somewhat overlooked,“ Martinez said. She also volunteered at Sunday’s walk.

While the Lupus foundation helps to create support groups and a community for those with Lupus, she constantly has to explain what Lupus is to most people, she said.

“I haven’t encountered many people at ASU who know what it is or have heard of it,“ she said.

The fundraising goal for Sunday’s walk was originally set at $50,000, but because of the economy the foundation is only hoping to match last year’s amount of $36,000, Kleppe said.

Beyond raising awareness, the foundation is also providing funding for new treatment as a new drug goes through the FDA-approval process. It is the first Lupus-specific drug in 50 years, she said.

By participating in the walk, Martinez said she would like to raise awareness, and ultimately money for treatment research and eventually a cure.

“The disease is pretty overwhelming,” she said. “I have it pretty good ... but other people aren’t so lucky.”

Contact the reporter at anatwood@asu.edu.