TRAVERSE CITY — When Sue Malone, a Traverse City mother of three, was diagnosed with lupus six years ago, her first reaction was relief because she finally knew why she felt like she had the flu all the time.
Then came grief.
An estimated 1.5 million Americans, including 60,000 in Michigan, suffer from the chronic inflammatory disease that prompts the immune system to attack healthy tissues and organs. About 90 percent of the sufferers are women.
It is a “mystery” disease, its cause yet unknown and a cure yet to be discovered.
But diagnosis isn’t a death sentence, said Tom McClellan, facilitator of the Lupus Support Group that meets monthly in Traverse City.
“When doctors say there’s no cure, it only means you can’t take a pill to make it go away,” he said. “There are many things you can do to manage it and live with it.”
Symptoms may be limited to the skin, but more often lupus also causes internal problems such as joint and muscle pain, extreme fatigue or damage to the central nervous system and blood vessels. In severe cases, it can harm the heart, kidneys, lungs and other vital organs. Other common symptoms include skin rashes, nail changes, hair loss, itchy scalp, fevers and sensitivity to sun, fluorescent lights and other forms of ultraviolet light.
The wide variety of symptoms and a general lack of lupus education and awareness make it hard to diagnose.
“You can have 20 people in the room and no two of them will have the same symptoms,” said Paul Patchen, whose wife, Violet, was diagnosed in 1976 when she was 55. It still was commonly believed then that people diagnosed with lupus would die within 10 years.
Violet is now 91.
The Patchens, who live in Antrim County, have regularly attended the support group for years for the camaraderie and to share their years of experience and research about the disease.
“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.”
Malone said she went through a period of grieving for the loss of her active lifestyle as well as some plans and dreams for the future. She used to go for 40-mile bike rides and water ski.
“You have to work on the things you still can do,” she said “You have to reframe it and work with the cards you’re dealt. You have to stay positive and not give up. That takes perseverance and tenacity.”
The support group meets every third Wednesday at Munson Community Health Center, 550 Munson Ave., in conference rooms A and B on the first floor. For more information on the support group, contact Tom McClellan at 357-2610, the Michigan Lupus Foundation at (800) 705-7677 or www.milupus.org