Personal Story: Learning to Live with Sjögren’s Syndrome

Last updated: May 22, 2016

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Lynn Chesters is Cynthia Lockley's sister-in-law. If you're a tennis fan, you know that Venus Williams has Sjögren's Syndrome; so does Lynn. Lynn sent Cynthia her personal story for the AccessAbility SIG.

Sjögren's Syndrome Foundation logo

What is Sjögren's Syndrome (pronounced Show-Grins)? Many people have never heard of it including dentists, doctors, and nurses. Thanks to the Sjögren's Syndrome Foundation, the word is getting out more and more.

Close to 6 years is how long it took to find out what was going on in my system. It started with dry eyes, and always one eye that seemed to be hazier than the other every time I blinked. Annoying but not a concern. About 5 years ago the pain in my body started slowly, but I was getting close to 60 so, why not have some pain? But this pain didn't seem to be in the joints, necessarily. I used my dad's old cane just to get out of bed some days. It was in my muscles and joints, an all-over inflammation, as if I had a fever. It would come and go, staying with me for a week or so. After a few years the pain became so bad I no longer walked to and from the train station to work, about a mile. Breathing became difficult with mild exercise. I was tested for heart trouble and lung dysfunction. My heart was OK but my lung function could have been better (Sjögren's affects lungs too). Doctor's could see no real reason for my lung problems. So I went on my way, taking cabs. walking at a snail's pace, and stopping frequently to ease breathing. I finally just succumbed to taking cabs to and from work. I was an active hiker, cycler, and golfer: this was perplexing to me and depressing!

Finally, my family doctor sent me to a Rheumatologist who discovered the blood marker for Sjögren's. She put me on Plaquenil (Hydroxychloroquine), which slows down the attack on a body's exocrine glands that affect the eyes and mouth and any organ that secretes moisture. It has helped quite a bit with the pain. I still get "flares" of aches and pain but they last just a few days compared to the week they used to last. The dryness in the eyes is progressively getting worse, especially at night. I apply eye drops at least a half dozen times every night. They hurt if I don't. I know I could help myself more with a Mediterranean anti-inflammatory diet and more fish oil. It's something I am working on.

The Sjögren's Syndrome Foundation has extensive information on their site at http://www.sjogrens.org. It has been the best $35 dollars I've spent in years to belong to this Foundation and that includes a newsletter. They have a calendar of events and seminars. Something new on this site that I hadn't seen before, is a video. The "A Place to Begin" video introduces you to three patients who share their experiences. You can watch this video without joining the foundation. There are also local support group meetings that are run by patients in the U.S., Canada, and internationally. I go to one in a western suburb of Chicago. There is a list of local leaders for these meetings on the Foundation's website with their email addresses. The Foundation's website has ton of helpful information and resources but my best experiences have been with people at the seminars and local meetings. I always learn something from them!

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To learn more about Sjögren's and find out what resources are available, contact the Sjögren's Syndrome Foundation online at sjogrens.org or by phone at 800-475-6473. Also see our list of resources and information on this website in Sjögren's Syndrome.