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    I think we probably have very few members with SJS but I get phone calls every couple of weeks from people with this condition so I know there are people out there...
    Rebecca Petris
    The Dry Eye Foundation
    dryeyefoundation.org
    800-484-0244

  • #2
    tests

    Dear Members

    Could anyboby give me a test i can propose to my doctor to carry out to test fot S.J.S please... I would like to rule out this syndrome or detect if i have it....

    many thanks
    locky

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    • #3
      All you ever wanted to know and then some

      Here is the National Institute of Health's link to Sjogren's Syndrome and how it is diagnosed: http://www.niams.nih.gov/Health_Info...me/default.asp

      Billye

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      • #4
        I thought it was Steven's Johnson's Syndrome...

        C

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        • #5
          Originally posted by locky View Post
          Dear Members

          Could anyboby give me a test i can propose to my doctor to carry out to test fot S.J.S please... I would like to rule out this syndrome or detect if i have it....

          many thanks
          locky
          Locky,

          SJS is not the kind of thing you can have without knowing it. It's an extremely serious, one-in-a-million toxic reaction causing skin death - similar to severe burns.
          Rebecca Petris
          The Dry Eye Foundation
          dryeyefoundation.org
          800-484-0244

          Comment


          • #6
            sorry

            I am so sorry for my lack of understading of this condition....
            my prayers are with the members with this condition......

            locky

            Comment


            • #7
              Oops I made a mistake

              We use sjs on the Sjogren's Forum to abreviate for Sjogren's Syndrome and I posted a link for that. Is there a way to remove it?

              I must quit posting at night.

              Billye

              Sorry for any misunderstanding.

              Comment


              • #8
                SJS patient first introduced me to Boston Sclerals

                Bravo, Rebecca, for recognizing and including SJS patients, here, in a special new forum . .I first learned about Boston Sclerals by talking to a lovely gentleman who had suffered the devastation of SJS very suddenly after taking a particular medication to which he was sensitive, and who spent the next 20 years not being able to open his eyes sufficiently to see his loved ones. After being fitted with the sclerals, he could look at his children for the first time in decades, and went on to pursue wonderful years of athleticism as a long-distance cyclist. . .The magic here is that even after SJS, which you described so aptly above, one can look ahead to recovering good function, and resuming life's daily activities, if one persists and takes full advantage of the resources that are out there. . .
                <Doggedly Determined>

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                • #9
                  Thanks Roj... And I am really sorry, everybody, for the confusion. I should have included an explanation of what Stevens Johnson Syndrome is in the first place - it's not exactly a household name. Quite rare really. But since one of the key benefits to medical forums on the web is helping people connect with others who have rare conditions, I just want to make it easier for people to find each other here rather than having to burrow through the stacks of old threads.
                  Rebecca Petris
                  The Dry Eye Foundation
                  dryeyefoundation.org
                  800-484-0244

                  Comment

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