SjSWorld

Sjogren's Syndrome On-Line Community

 



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About SjSWorld

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History

SjSWorld is the creation of two women, "Spring" and "Care" who met online in a Multiple Sclerosis chat room in 1997. Both women had been searching for answers to illnesses that had been diagnosed as MS/possible MS respectively, yet did not quite "fit" those diagnoses in all respects. Both were seeking support but were not sure where to find it. Care finally received a diagnosis of Sjögren’s Syndrome in 1998 at The Cleveland Clinic; Spring received her Sjögren’s diagnosis in 1999 from a rheumatologist in Florida.

Care had faced years of loneliness, misunderstanding and frustration while she searched for an answer to a mysterious illness that lacked a "name". Spring was exasperated when her MS diagnosis and symptoms were frequently questioned and answers were not forthcoming until the Sjogren's diagnosis. Both women wanted to support others that needed help. Little information or support had been available for them. They decided to create an Internet Community for all of those who have Sjögren’s Syndrome, and named it SjSWorld.

SjSWorld was created in October of 1999. "Spring" was the creative "Webmaster" and designed the site in her mind on the way home from her doctor and new diagnosis! Care had already researched Sjögren’s Syndrome and had a "medical arsenal" established in her computer room! She organized all the information and links she had collected as these were essential to the website. Live chat and message boards were added to round out the experience.

By November 1999 word had "leaked" that there was a new Internet site for Sjögren's Syndrome. People joined from all over the world…the response was phenomenal!

For a PDF file about SjSWorld to print or take to meetings, click here.

Staff

The staff at SjSWorld is integral to our success. We truly appreciate each and every one of them and all that they do. Please take a bit of time to meet them by reading the on-line biographies. We think you will find yourselves right at home with them! Here they are, listed in alphabetical order!

Contact

E-mail address to contact SjSWorld: sjogrens@sjsworld.org

 


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