Several members of the Newnan Lupus Support Group recently participated in the March to End Lupus. Pictured are, left to right, Anne Tucker, Danita Malcolm, Greta Lewis, Bo Olmstead, Karon Beasley, Regina Olmstead, Q. Simine Cole and Gillian Ravn.
May is Lupus Awareness Month, and the Greta Lewis Lupus Foundation works to spread awareness of the mysterious auto-immune disease, which disproportionately attacks women.
There are more than 55,000 Georgians with lupus, and on average, 90 percent of lupus patients are female. It’s estimated that about 1.5 million Americans have lupus.
Lewis was diagnosed in 2007. “It came on with a very bad headache, and then I was feeling very fatigued. I was waking up every morning with unexplained body aches and not knowing why I was so tired, why I can’t get out of bed,” she said.
She felt like she had moved a whole house of furniture the day before, but she hadn’t done anything that should have made her feel so achy and tired.
“I had begun to take Aleve in the morning and at night, every day. And when I had gone through a whole bottle of Aleve – a 100-count bottle – I said, ‘Wait a minute, this is not right.’”
So she called her health insurance company to ask what kind of doctor she should see. They suggested a rheumatologist. He quickly suspected lupus, and blood tests confirmed it.
“He said he couldn’t believe that I walked into his office, there was so much inflammation, through my entire body.” She immediately started on medication, but the side effects from the medication were so bad she went back to the Aleve for a while.
Then she had a bad episode. “It was like an elephant was standing on my head,” Lewis said. She had shortness of breath, too, and ended up in an emergency room. She found another rheumatologist who put her on different medication.
Sometimes, lupus patients have a certain “look,” when the disease is attacking their skin, causing skin problems and hair loss. But for Lewis, the damage was internal. “It attacks my lungs, it attacks my kidneys. I developed blood clots in both lungs,” she said.
Lupus patients need to see a lot of doctors. “It causes a domino effect on your health. You will need a heart specialist, a psychiatrist, a lung specialist, a dermatologist,” Lewis said.
It takes awhile to find the right combination of medication. Currently, one of the medications Lewis takes is typically used to treat malaria. She’s also on the steroid prednisone.
Many patients with lupus might seem OK most of the time, but that’s only because they don’t have any other choice.
“You have to be fine. Or you can lay and die,” Lewis said. “So you have to continue to move, you have to not focus on it.”
Lupus tends to come on in flares, and those who have it work to avoid things that will trigger a flare. Stress is usually the primary trigger, at least for Lewis. Those with lupus can’t spend too much time in the sun in the summer, and cold can trigger a flare as well. Certain foods can also be a trigger. The fact that it attacks women so much more than men “suggests that hormones may play a role in the disease,” Lewis said.
Lewis decided to start her foundation to bring more awareness to lupus.
“I didn’t want a foundation to be started in memory of Greta Lewis. I wanted to have a foundation while I yet live; I wanted to be involved and bring more awareness to lupus,” she said.
She’s a support group facilitator with Georgia chapter of the Lupus Foundation of America, and is an active volunteer with the Newnan Lupus Support Group. She also collaborates with other foundations.
Lewis and several other Cowetans with lupus recently participated in the annual Walk to End Lupus Now at Piedmont Park in Atlanta.
Lewis wants people to be are of the symptoms of lupus. They are many and varied. Typically, someone who has five of the symptoms should see a doctor to be tested for lupus.
The most common symptoms include: painful or swollen joints, unexplained fever, extreme fatigue, weight loss or gain, shortness of breath, swelling in or around the legs, depression, swollen glands, chest pain upon deep breathing, anxiety, dry eyes, and skin lesions that appear or worsen with sun exposure.
“Lupus is a complex disease” and researchers still don’t know why it develops, or why it strikes some people and not others, Lewis said.
The Lupus Support Group meets the first Monday of each month at 7 p.m. at Country Inn and Suites, 1125 Newnan Crossing Boulevard East. Contact Regina Olmstead at 404-550-5263 for more information.
You can find out more about the Greta Lewis Lupus Foundation by visiting the organization’s Facebook page.
Por Sarah Fay Campbell
20 de Mayo de 2015
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