COVINGTON - Angela Bryan was in the eighth grade when she started experiencing puzzling symptoms: fever, body aches, joint pain, loss of hair, fatigue.
Doctors kept diagnosing her with some type of infection or said she was simply suffering from stress. She took test after test to determine whether she had mononucleosis, but they all came back negative.
Bryan suffered for 10 more years before the real culprit was diagnosed - lupus.
There are several types of lupus. Bryan has the most common, called systematic lupus erythematosus, a chronic autoimmune disease that can affect the joints and almost every major organ in the body, including the heart, kidneys, skin, lungs and brain.
The immune system, designed to protect against infection, mistakenly attacks the body's own tissues and organs. A major symptom is inflammation. The disease is characterized by alternating periods of flares and remissions.
Since she was diagnosed at age 25 in 2003, Bryan has had three flares. She's in the midst of one right now. It came on last spring and she's spent the last few months on the couch. Her latest flare has caused chest pain, fatigue, migraines, joint pain, hair loss and other problems.
"If you just pick something, it hurts," she said.
Bryan is hoping she can get off the couch by Oct. 24, when the Alliance for Lupus Research holds the annual Walk With Us to Cure Lupus event in Atlanta.
The event raises money for research to prevent, treat and cure the disease. So far, the money raised has yielded promising results.
Researchers have now identified 13 genes linked to lupus.
"That's the way to find a cure, through these genes ... That's the key to everything," Bryan said.
In addition, a new drug developed specifically to treat lupus is in the trial stage. No medication specifically for lupus exists yet - Bryan has to take an anti-malarial drug and steroids to help with inflammation. The medicines have harsh side effects, and the consequences of long-term use are unknown.
So Bryan is hoping for a cure or better treatment in her lifetime, and she is committed to helping find one.
Even if she can't walk on the day of the event, her husband, Lee, and other family members will take part.
The team goal is about $3,000. Bryan's individual goal is $800. So far, she has raised $170.
There is little funding for lupus research and the disease doesn't get much attention, even within the medical community, Bryan said.
She said that may be because the mortality rate isn't as high as with some other diseases - people most often die from complications associated with lupus - and because it's a "women's disease."
Nine out of 10 people who get lupus are women. One out of every 2,000 American women and one out of every 700 women worldwide have the disease.
For Bryan, it's the unpredictability that can make lupus so difficult to handle.
"I could have this flare and never have one again. I could have this one and have another one in two months," she said. But regardless of whether she has another flare, Bryan lives with the symptoms of lupus every day - they are just heightened during a flare.
"You try to live your life as best you can and not let it control you and live a happy productive life like everybody else," she said, though she cannot hold down a job or participate in outdoor activities like hiking or rafting. Pregnancy is also considered high-risk.
But Bryan said she's come to accept her condition and even believes there's a reason for it.
"As a Christian, I believe God has a plan for my life. I accept that he has a reason ... I'm going to use my lupus to serve him and serve others. I don't know why he gave me this, but he did and he always does what's best for me," she said.
One gift Bryan said she has received is more empathy for others.
"Before, I didn't understand at all. I had no concept of people's pain or agony when they went through a death or sickness. Now when somebody is sick, I can't stand it," she said.
It's the hope that she can spare other people the pain she's gone through that motivates Bryan. Her family has a history of autoimmune problems - a great aunt also had lupus, an aunt died from multiple sclerosis and her sister has rheumatoid arthritis.
Bryan's team is named is H.E.R. Team, for her nieces, Hannah, Emily and Rebekah.
"They are the future of the family. I'm racing for them so they don't get lupus," she said.
Walk With Us to Cure Lupus has a goal of raising $80,000. So far, more than $17,000 has been donated.
For more information on the event or to make a donation, visit www.lupusresearch.org or call 800-867-1743. Donations can also be sent by mail to the Alliance for Lupus Research. Checks can be sent to the ALR office at 28 W. 44th St., Suite 501, New York, NY 10036. Those wishing to make a donation in support of Bryan should write the identification number GAA-190001 in the memo line of the check.
Crystal Tatum can be reached at firstname.lastname@example.org.
SideBar: Facts about lupus
· Lupus can be hereditary. Onset can be triggered by environmental factors such as infection, stress, sunlight and medication.
· According to the Alliance for Lupus Research, 1.4 million people in America have lupus.
· Nine out of 10 people who develop lupus are women, and the disease usually strikes during the childbearing years.
· Symptoms include low-grade fever, skin rash, extreme fatigue and painful or swollen joints.
· No single test is used to diagnose lupus. It may take several months or years after symptoms first appear to get a diagnosis. Blood tests are used but are not definitive.
· There is no cure for lupus.
· The Alliance for Lupus Research is a national voluntary health organization based in New York City founded in 1999 to find better treatments and prevent and cure lupus.
· Since its inception, the ALR has committed more than $50 million to lupus research.