Sandy Sharett of Hampton is one of about 55,000 Georgians who have lupus. “It’s not fun to deal with, but there’s life after lupus,” she says.
Sandy Sharett of Hampton was 16 years old, a normal, healthy teenager on spring break in Florida, when she saw the first symptom: a butterfly-shaped rash across her face.
More symptoms followed. She felt tired. Her body ached. Her doctors thought that maybe she had the flu.
“It was rough,” Sharett said. “There were some times I couldn’t even get out of the bed, I was hurting so bad.”
Doctors tested her blood and put her on steroids, which helped somewhat. Finally, they identified the culprit — lupus, a disease that put her body’s immune system into overdrive, causing it to essentially attack itself. Lupus causes pain, swelling and potentially tissue damage. Nobody’s sure what causes it, but it does seem to run in families with autoimmune disorders. Eight in 10 sufferers are women, and it’s two to three times more prevalent among women of color.
Lupus can’t yet be cured. It can only be a managed. And although the disease sometimes kills those who have it, many people just live with it.
It’s not easy.
“I live with pain,” Sharett says. She has arthritis, osteoarthritis in her left foot, bursitis in both hips, rheumatoid arthritis everywhere else. She also had pleurisy at one point, a lung and chest inflammation that causes severe chest pain. The worst of it seems to come and go about once every five years.
Depression was also part of the collateral damage. “I was like, nah, I’ll be OK, I’ll work through it,” Sharett says. “And I tried really hard to work through it, but it didn’t ever go away.” Steroids helped blunt the pain of lupus but left Sharrett, normally very laid back, agitated and anxious. Antidepressants calmed her back down and took care of the depression.
Twenty-three years after her diagnosis, Sharett now has two children — something she once thought she might never have because of the disease — a husband, and a full-time job as an accounting clerk with the Clayton News Daily in Jonesboro. She’s been there seven years.
Life is generally good, but Sharett still tires easily, and not everybody gets it.
“Even my daugher asked me, ‘Why are you always tired? All you do is work in an office,’ ” says Sharett, who handles comments like that with a certain world-weary humor.
“You never understand until you deal with it,” she says.
Statistics bear that out. According to the Lupus Foundation of America, research shows that most Americans know little or nothing about lupus. The foundation hopes to change that by declaring May as Lupus Awareness Month. It’s also encouraging its members to Put On Purple — that is, wear some purple article of clothing — on Friday to spark discussion of lupus.
Teri Emond, program director for the Lupus Foundation’s Georgia chapter in Smyrna, says about 55,000 people statewide suffer from lupus, with only 113 rheumalogists in the state to treat them. It could be better. “Do the math,” Emond says.
The foundation’s Georgia chapter augments medical care by acting as a clearinghouse for information, she says. It conducts nine symposiums throughout the state about subjects like “Living With Lupus” and “Lupus in the Kidneys.” The foundation also acts as a point of contact for 30 support groups in Georgia, one of which meets in Henry County.
The relative dearth of support groups speaks to how lupus exhausts those who have it. Because groups are usually facilitated by people with lupus — and because people with lupus are sometimes too tired to even show up at those meetings — it’s necessary to have several people willing to share leadership before a support group can get off the ground. “The last thing we want is for someone to show up at a meeting and have nobody be there,” Emond says.
Thomas Walters of Morrow is one such facilitator. As one of the relatively few men afflicted with lupus, he started a support group specifically for male lupus sufferers. He also helps lead a southside group that meets quarterly at Piedmont Henry Hospital in Stockbridge.
Walters, 56, learned six years ago that he has lupus. The first clue, sores, was initially misdiagnosed, but subsequent blood tests led to discovery of a low platelet count and, eventually, lupus.
He hasn’t let lupus stop him. Walters works full-time providing resident services for senior high-rises in Atlanta. That he has a supportive spouse has helped. “At first it was a little difficult for my wife to adjust to,” he says, “but she came around.”
Walters says he keeps the lupus at bay through good, clean living: eating right, exercising regularly, and keeping stress to a minimum.
“There’s life after lupus, but there’s quality life after lupus,” he says. “You have to make the choice.”