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Posted: Friday, June 1, 2012 7:35 am
By Emily May – email@example.com
Vicki Siebe won’t let a little autoimmune disease or two get her down.
In 1998, Siebe went to the doctor for headaches and itchy, burning eyes. She had a history of autoimmune disease in her family, so her doctor tested her. She came back positive for Sjogren’s Syndrome.
While it isn’t the most well-known autoimmune disease, it is one of the more prevalent. Sjogren’s (pronounced “show-grins”) is the second largest in the category, behind only rheumatoid arthritis. It is actually more common than lupus.
Sjogren’s attacks the moisture producing glands in the body — like those found in the mouth, eyes and lungs. Siebe’s first big realization of exactly what Sjogren’s can do came when her father died in 2002. She said she felt pressure in her eyes, but was unable to cry. By the end of the day, her eyes were blood-red.
“You literally don’t have any tears,” Siebe said. “It means that there’s no way to get rid of dust or wind. It can cause eye disease.”
She also produces very little saliva, which makes it hard to speak or eat.
“It assists in keeping bacteria washed out and like when you eat, the saliva, of course, aids in digestion,” Siebe said. “It affects all the way down. It affects your whole digestive system because you don’t have the breakdown in your mouth.”
There are two types of Sjogren’s diagnoses — primary and secondary. Primary means Sjogren’s is the only autoimmune diagnosis. Secondary includes more than one autoimmune diagnosis. Siebe tested positive for lupus in 2009, upgrading hers to secondary.
“That just complicates my situation,” she said. “I can’t go out in the sun and the heat, I have to keep covered up.”
Sjogren’s is also a likely factor in a lymphoma cancer diagnosis Siebe received in 2004.
She became so weak that she had to be carried into the doctor. At the time, she wasn’t aware that Sjogren’s patients are 44 times more likely to develop lymphoma than most people.
“I was stage four,” she said. “I wasn’t given very long to live. Luckily, I had two physicians — new physicians — who, at the time of this were very, very aggressive. They got me right into chemo. I had to have surgery. That’s been eight years ago. I’ve been in remission for about seven years.”
After her cancer scare, Siebe said she planned on returning to life as usual. But, she quickly found her priorities had changed.
“In the last two years, because of the lupus and the Sjogren’s, I have had a major life change,” she said. “I quit work in 2006. After my cancer, I went back to work for about a year and a half, but I couldn’t handle some of the stress. Actually, my priorities had changed and the meetings and company things just wasn’t very important to me any more.”
At the suggestion of her husband, she took a little time off work. She quickly found that her entire life had changed. The lupus made her intolerant to the sun. Activities she used to enjoy — gardening, fishing, going to auctions with her husband — were no longer possible without major consequences later. So, she did a little research on the Internet and found the Sjogren’s Syndrome Foundation. She joined the foundation and later decided to become an awareness ambassador for southern Indiana.
“I thought that was one thing I could do to use my brain,” Siebe said. “The advantage is everyone who is in the foundation has Sjogren’s. They know there are days that you can’t get out and do anything. There are no deadlines and no time lines. It’s a volunteer thing.”
Siebe said she hopes to bring a little more notoriety to Sjogren’s Syndrome.
“They all think it’s a weird disease, when actually it’s the second-largest autoimmune disease,” Siebe said.
She has already raised more than $300 by organizing a jean day at Castle North Middle School. She said she also hopes to start a support group and raise a little awareness for the disease.
“I want people to be aware that the disease is out there,” she said. “If you have symptoms, get to a doctor.”