“I want to let people know that you can have it and live a lot of years after diagnosis,” Violet said. “I’ve been luckier than some.”
She is diagnosed with discoid lupus, also called cutaneous lupus erythematosus. Limited to the skin, it doesn’t cause the organ damage that sometimes occurs with systemic lupus erythematosus (SLE), the most common and serious form. Another type is drug-induced systemic lupus, which causes temporary lupus symptoms in people who take certain medications.
Paul Patchen often talks about the effects the disease can have on spouses, other family members and caregivers. Sometimes family and friends don’t realize the severity of the disease because they don’t see obvious signs of illness.
“They think they’re living or dealing with a hypochondriac, which just causes more stress,” he said. “You have to be on your toes and you have to have a sympathetic spouse, and then you have to help other people get through it because it is stressful for the family.”
Art Gibson¸ a retired teacher, and his late wife, Cindy, became lupus advocates and rejuvenated the Traverse City support group after she was diagnosed in 2000. They also attended lupus conferences and events, brought back information and put on presentations.
“She was feisty,” he said.
Cindy won a Lupus Foundation Warrior award for her advocacy and leadership in Traverse City. She died in 2011 at age 64.
Gibson doesn’t attend the support group anymore, but remains in touch with some of the group’s members.
A mother of three, Malone said the group was especially important to her in the beginning when she knew very little about lupus and the importance of recognizing and managing stress, which can cause flare-ups.
“It’s very valuable to talk with people who have the same problem and know that you are not the only person with lupus,” she said. “I’d heard of lupus when I was diagnosed, but I didn’t really know what it was. It got scarier when I learned more about it because so many things can happen with this disease. But you have to know about it. You can’t put your head in the sand.”