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Local woman hopes to spread word about autoimmune disorder

RACINE – Clare Johnson is one of the lucky ones. Ten years ago, the Racine woman developed two large, swellinglumps – the size of an apple or a small grapefruit – just under herjaw. “The doctor said it might be a virus,” Johnson, now 53, said.She was prescribed some antibiotics. The swelling subsided but then returned in about three months.She would receive another prescription, and another, to no avail.When Johnson went to another doctor, she was prescribed some sortof steroid medication. But like with the previous treatment, shecontinued to get sick. “I knew it wasn’t a virus. It had to be something else,” Johnsonrecalled. It took just less than a year for Johnson to be diagnosed withSjögren’s syndrome, an autoimmune rheumatic disease that affectsmoisture-producing glands and causes dry mouth and eyes. Despite the misdiagnosis, Johnson can’t complain, knowing itcould have taken much longer to find out what was wrong withher. According to the Sjögren’s Syndrome Foundation, on average, ittakes 6ƒ years for patients with the disease to get adiagnosis. “It’s really an under-diagnosed condition,” said Dr. Tom Murphy,a rheumatologist at Wheaton Franciscan-All Saints hospital, 3801Spring St. Murphy said symptoms of Sjögren’s (pronounced SHOW-grin) areoften very similar to other related conditions, which makes itparticularly difficult to pinpoint. It’s that reason that Johnson, who continues to deal with thedisease today, made it her goal to help reduce the average time ofdiagnosis, mainly through education and more awareness of thedisease in the Racine community. Johnson said she is one of hundreds of “awareness ambassadors”around the country for the Sjogren’s Syndrome Foundation, whichannounced this month its goal of “shortening the time from theonset of symptoms to a Sjogren’s diagnosis by 50 percent over thenext five years.” Named after Henrik Sjögren, the Swedish physician who identifiedthe condition in 1933, Sjögren’s syndrome is a chronic autoimmunedisorder – when the immune system attacks the body – that affectsthe moisture producing glands in the mouth, skin, eyes andrespiratory tract. It affects the salivary glands, which producesaliva. Murphy said he sees up to 100 Sjögren’s patients a year inRacine. Some patients have the primary condition, others developSjögren’s along with other autoimmune diseases. Affecting about 4 million Americans, Sjögren’s is the secondmost common autoimmune disorder – although it’s often overshadowedby related diseases such as lupus and rheumatoid arthritis. It gained some attention this year after tennis champion VenusWilliams announced she had been diagnosed with the condition. Johnson’s objective as an awareness ambassador is to continuemaking people more aware of the disease at a grassroots level.Currently, she’s contacting friends and family, and local doctorand dentist offices, providing pamphlets on Sjögren’s. “The awareness, I hope, will lead doctors to conduct propertests, and patients asking the right questions,” she said. Ten years after she was first diagnosed with the condition,Johnson keeps herself pretty busy. She is an assistant softballcoach at the University of Wisconsin Parkside, a kinesiologyconsultant and is starting her own business. But every day remains a struggle in controlling Sjögren’s. Every day, Johnson takes eye drops and makes sure she’s alwayshydrated. “I chew a lot of sugarless gum,” she said, adding it helpsprevent her mouth from drying. “You take your body for granted until it doesn’t do what it’ssuppose to do,” she said. “I was lucky I got diagnosed early.”

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