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What Is Sjogrens Syndrome?

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Submitted by Carolyn Lee

Ask 100 people to tell you what they know about Sjogrens Syndrome and 99  will probably say, Sjogrens Syndrome, What is That?  Sjogrens Syndrome (pronounced Show-grins) is a chronic auto-immune disease in which the white blood cells attack and damage the moisture producing glands in a person’s body.  The effects of this disease are so varied that for many years, sufferers were thought to be imagining the symptoms.  Even today, many doctors have never heard of it.  It manifests itself in varied ways.  Most people have extreme thirst, their bodies no longer make saliva, which, in time causes most sufferers to lose all their teeth (were you aware that saliva is an important factor in maintaining good teeth?) while others may have extreme dry eyes; some develop lupus, cancer; heart problems, etc.   Sjogrens can affect every organ in the body so it is vital that sufferers have the right doctor and support from family, friends and an active support group.
                                                         
Several doctors have told me there are many people in our area (Central, Baton Rouge, Baker and Zachary) that have Sjogrens; however none can give me the names of their patients due to privacy issues.  We desperately need to form a Sjogrens Support Group in order to share positive information that has been beneficial in coping with this ailment.  It is not known what causes S.S. but it IS known that there is NO CURE for it.  I was identified with Sjogrens four years ago when I mentioned to my pain doctor’s P. A. that I stayed thirsty all the time.  I would wake up every hour during the night to drink water.  She recommended I see a Rheumatologist.  That shocked me as I had never heard of Sjogrens but soon learned that most people have it for several years prior to being diagnosed.  Sjogrens is part of the Arthritis family.  

If you are interested in being a part of or helping to start a local Sjogrens support group, please email Carolyn at kencarlee1@bellsouth.net.

3 Comments

  1. Marilea Spedale

    June 30, 2010 at 10:23 am

    I was pleasantly surprised to read an article on Sjogren’s Syndrome and the possible formation of a support group in the Central area.
    Diagnosed with SS in 2009 I find it is a most difficult syndrome to explain. Most people think I am just hoarse all the time but it is more….so much more.

  2. Beverly Stuckey

    July 2, 2010 at 3:33 am

    I was diagnosed with Sjogrens in 2001. I am very excited to hear that there may be a support group in the Central Area!! Sjogrens is considered a cousin to Lupus and can immitate MS and many other autoimmune diseases. Sjogrens IS NOT JUST DRY EYES AND DRY MOUTH. Some have very systemic and severe forms of the disease. Please let us know more about the formation of the support group!

  3. Carolyn Lee

    December 27, 2010 at 11:47 pm

    Our Sjogrens Syndrome Support Group has gotten off to a GREAT start. We meet every 3 months at the Central Library on Joor Rd., the first Wednesday of the month at 4:30 p.m. Sjogren Sufferers are encouraged to bring family members as well as friends to help others understand what it is like to have Sjogrens. The next meeting will be on February 2, 1011. Should you desire more information, feel free to contact me at 262-1060 or kencarlee1@bellsouth.net.

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