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Holiday shoppers can help in fight against ‘mystery disease’ Sjogren's

Saturday, October 26, 2013
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“I was always very active. . . . But after the birth of my second child, I felt so horrible I had to stop for the longest time. Happily, I’ve learned how to manage the disease, so I am able to exercise and play tennis again,” says Kim Gross, who has Sjögren’s Syndrome.
“I was always very active. . . . But after the birth of my second child, I felt so horrible I had to stop for the longest time. Happily, I’ve learned how to manage the disease, so I am able to exercise and play tennis again,” says Kim Gross, who has Sjögren’s Syndrome.

For the longest time, Kim Gross felt like she was talking and nobody was listening.

“I was going from one doctor to the other, and I actually felt like they were brushing me off,” said Gross, a Latham resident who complained of muscle fatigue and dry eyes and mouth for six years before being diagnosed with Sjögren’s Syndrome in 2005.

“They would tell me, ‘You just had a baby, no wonder you feel horrible,’ but I knew something wasn’t right. I was 33, and I felt like I had the body of a 70-year-old.”

Sjögren’s is a chronic autoimmune disease in which a person’s white blood cells attack their moisture-producing glands, typically creating, among other symptoms, dry eyes and mouth. It’s a disease many people learn to deal with, but not without mounting a strong fight. There is no cure and, while medications can provide some relief, finding the right prescription without any ill side effects can take a while.

Capital Region Sjögren’s Syndrome Holiday Shopping Event

WHAT: A fundraiser for the Capital Region Sjögren’s Syndrome Support Group

WHERE: The Crossings of Colonie, 580 Albany Shaker Road, Loudonville

WHEN: 5 to 8 p.m. Tuesday

HOW MUCH: $10

MORE INFO: 424-0486, www.sjogrens.org

And, if symptoms are ignored and issues not addressed, the consequences can be dire, including fatigue and joint pain and damage to the kidneys, lungs, liver, pancreas and central nervous system.

Nine of every 10 people with Sjögren’s are women.

Gross and the Capital Region Support Group of the Sjögren’s Syndrome Foundation will try to raise awareness of the disease with its inaugural Sjögren’s Holiday Shopping Event at The Crossings of Colonie on Tuesday. The Crossings, at 580 Albany Shaker Road, is a town park with a large meeting house where several vendors will be set up.

“This is our first big fundraiser, so we’re hoping it goes well,” said Gross, 45. “We’re charging the vendors $75, but they keep their profits from the things they sell. The money we raise will be from a $10 admission fee for the public and also a silent auction and raffles.”

Difficult diagnosis

It was Dr. Henrik Sjögren, a Swedish ophthalmologist, who first identified the disease in the 1930s. His work, however, hasn’t made diagnosing the disease much easier.

“It can be a mystery disease, and I struggled with it for six years before I was properly diagnosed,” said Gross. “Thank God for my ophthalmologist, Dr. Richard Brass. I thought I had pink eye, so I went in to see him with my eye inflamed, and he started asking me about other symptoms. He asked me about muscle and joint pain and fatigue and at first suspected Lupus. But when the blood test came back, it was Sjögren’s, and he pointed me in the direction of a rheumatologist.”

Like most sufferers with Sjögren’s, Gross’s symptoms included the ones mentioned by Brass.

“I was always very active,” said Gross. “I played a lot of tennis and did aerobics. But after the birth of my second child, I felt so horrible I had to stop for the longest time. Happily, I’ve learned how to manage the disease, so I am able to exercise and play tennis again.”

Gross, who also recently completed her first half-marathon, said the mental hurdle she faces each day can be just as hard as the physical struggle.

“I worked very slowly to get back in shape,” she said. “I would get up in the morning and be stiff for two hours. You’d feel like you couldn’t exercise, but a body in motion is better than one not in motion. Exercising provides many more benefits than not doing anything.”

While Elaine Harris of Maryland started the first Sjögren’s support group 30 years ago, it was Gross and Denise Hughes of Selkirk who helped get the Capital Region chapter up and running about six years ago.

“It’s very helpful being around other people who have the same problem and are going through what you’re going through and appreciate what your life is really like,” said Hughes, 51. “There were days that if I didn’t have three children, I never would have made it out of bed, and I was never athletic like Kim. It’s amazing what she’s done and other women who have run marathons. I told Kim, ‘You run, I’ll just stand there and hand you the water.’ ”

Star turn

While Gross and Hughes hope to continue to raise awareness of Sjögren’s locally, those on the national scene working for the same cause are getting a huge assist from tennis star Venus Williams, who was diagnosed with the disease in 2011.

“Her willingness to step up and help us with awareness has been critical,” said Sjögren’s Syndrome Foundation CEO Steven Taylor, an East Greenbush native and Columbia High School graduate. “She’s one of our younger patients who suffers from some serious complications, yet she’s still playing tennis. She talks a lot about her fatigue and joint pain, and it is a tremendous challenge. Yet, she’s trying to overcome, and it’s a great message to others to try and do the best you can.”

While Williams’ world ranking has slipped to 53 after being No. 1 in 2002, she is a great example of how people can still have an active and healthy lifestyle with some work.

“It’s a disease that can be debilitating, and the seriousness of it varies from patient to patient,” said Taylor. “It’s a disease that is chronic, so it never goes away, and it really is a life-altering disease. It can be very frustrating and very scary, but people do overcome it.”

Those people who overcome the disease are the ones who have had it properly diagnosed, and the earlier the better, Taylor said.

“When this disease is not diagnosed, people eventually get sicker and are presented with more serious complications,” he said. “There are people who have never been diagnosed, and their internal organs start to shut down because they’ve been compromised by Sjögren’s, and they end up dying. If these people had been diagnosed earlier, monitored and treated more aggressively, they could have lived.”

Taylor’s mother lives in Guilderland and has been diagnosed with Sjögren’s.

“I’ve been involved in nonprofits my whole career and, initially, I was involved with political campaigns,” said Taylor, who majored in political science at Boston University, got his MBA from Auburn University and worked for the American Cancer Society and the American Heart Association before moving to the Sjögren’s Foundation 10 years ago. “My father died of cancer, and now I’m working with Sjögren’s, which my mother has, so I really value what I do.”

While Taylor is unable to return to the Capital Region for Tuesday’s fundraiser, Sheriese DeFruscio, the foundation’s vice president of development, will be in attendance. Like Taylor, DeFruscio is a Columbia High graduate.

“I work for the national foundation, but I do it out of my home here in East Greenbush,” said DeFruscio. “I work with a lot of groups around the country that are putting on fundraisers. It’s a very difficult disease to diagnose, so that’s why it’s important we raise money and raise awareness.”

 
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