Lupus Foundation of America

News Article - Cherokee Tribune

Wednesday, March 14, 2007
Lupus

By Sarah E. Alexander
Cherokee Tribune Staff Writer

It took years before doctors concluded Karon Beasley of Woodstock had lupus, and now she is working to make sure others do not remain undiagnosed.

"That's the problem with lupus. The average patient, including myself, will go to four or five doctors to try to find out what is wrong," she said.

Ms. Beasley, who was diagnosed with systemic lupus in 1998, is raising awareness and funds for research of the disease.

Lupus, an autoimmune disease, can affect parts of the body, including joints, skin, kidneys, heart, lungs, blood or brain.

"Your immune system is confused, and it attacks your body," Ms. Beasley said of the disease. "If there is nothing to attack, it attacks your organs, so wherever I'm being affected is the enemy, and that's called inflammation."

Ms. Beasley, 39, who is on full disability and has a home-based gift basket business, said her symptoms include pain, fatigue, headaches, facial rash and a daily low-grade fever. It also can lead her to sleep as long as 12 hours a night.

"I take 25 medications a day. I didn't start out with 25. - damage control is what this is every day," she said, adding she has never been in remission. "It's a very disabling disease and fatal."

Ms. Beasley said many times when she makes plans, she later has to cancel them.

"Every day is an unpredictable day with an illness like this," she said, adding she takes vitamins and exercises as much as she can. "I've learned to live with it."

According to Maria Myler, president and CEO of the Georgia chapter of the Lupus Foundation of America, 85 percent of lupus patients are women age 15 to 45, and 15 percent of lupus patients are men and children. She said it is a misunderstood and misdiagnosed disease.

"There is a great need for more awareness and more funding for research and education to help the 1.5 million Americans and over 55,000 Georgians suffering from this devastating disease," she said. "It is time for all of those living with lupus to receive their fair share of funding and resources. This quiet disease has gone unrecognized, underfunded and invalidated for too many patients for too long."

Ms. Myler said through the upcoming ING Georgia Marathon on March 25 and the chapter's first Walk For Lupus Now, which is at 4 p.m. April 21 in Piedmont Park, the organization hopes to raise more than $100,000.

"Karon is representing many of the new and exciting volunteer leadership and volunteer advocates who have joined and become part of many new programs and events in the Georgia chapter of the Lupus Foundation of America," Ms. Myler said. "She's an inspiration to me and so many to encourage us to work even harder to raise funds and awareness."

More awareness is needed because some people do not understand the disease, Ms. Beasley said.

"The frustration with the illness is most patients don't look sick," she said. "With breast cancer- the awareness is out there, so people are being screened, their lives are being saved, and that is what we'd like to accomplish in the Georgia chapter."

Last week Ms. Beasley went to Washington, D.C., with the Georgia chapter of the Lupus Foundation of America to talk with elected officials about lupus.

"Being on Social Security and disability full time, I cost the government $7,000 a month in medication," she said. "That was my point to them - if they can fund research, and we can find some answers as to why these autoimmune diseases exist, then people can go back into the workforce."

Ms. Beasley, who plans to walk in the Walk For Lupus Now, said many families are affected by the disease.

"If you ask, someone you know has lupus or they'll know of someone," she said, adding having her family nearby helps. "I have a good support system, but there are a lot of people who do not."

Sandra Beasley of Canton, Ms. Beasley's mother, said it is devastating to see her daughter suffer from lupus.

"I really believe she was born with lupus or had lupus as a child because she was always sick, and we could never get her well," said Sandra Beasley, who also has a son with a different autoimmune disease. "It's heartbreaking, but we really need a breakthrough of the treatment on lupus and what causes it."

She added she hopes the fund-raising efforts will be successful.

"We're hoping to raise lupus awareness in order to get money for research and hopefully find a cure and a new breakthrough," she said. "I still have hope."