Search and Research

The more that I research Sjogren’s Syndrome, live with it and read about other’s who are living with it, the more I realize that we are all looking for answers.  Researchers are trying to find definitive answers to what causes Sjogren’s and how to best treat it. While patients are less interested in the causative factors & more interested in answers about how to feel better. While I do find research interesting to read about, my desire to feel better & improve the quality of my life is more important. I suspect that most of us “Sjoggies” (I love that term) feel the same way.  But finding the right doctor or diagnosis can prove to be as challenging as the chronic medical challenges we face.  It is not uncommon for a Sjogren’s Syndrome patient(s) to spend years trying to identify their diagnosis/es. I suspect that part of the reason for this delay is because Sjogren’s includes such a collection of over-lapping symptoms that it muddles the process.  Add in a complex past medical history with current symptoms and well…many of us land in the “floundering” without a diagnosis category.  When I recently discovered  the Sjogren’s World Forum and started reading the posts, I was struck by an interesting observation.  At the bottom of the text box of many of the posters, is a line (and multiple lines for others) of all of their diagnoses and medications. It reminded me of an identification badge of sorts or an introduction one might hear in a 12 step program. Hi, my name is Sandy & I have Sjogren’s Syndrome; RA; Chronic Fatigue, Fibromyalgia, etc.  I am trying to learn whether this is the typical profile of a Sjogren’s Syndrome Patient.  Does Sjogren’s most often co-exist with other diagnoses? Do some of these folks just get slapped with all sorts of diagnoses at various times which are  independent of the big picture or one definitive and distinguishable diagnosis? Or do patients present so differently, that there is still no clearly obvious and accepted profile of the Sjogren’s patient?  Perhaps it’s the fact that there are too few physicians that even know enough about how to recognize it.   At the end of the day, whatever the answers are to those questions, still result in the management & treatment of symptoms (that is, if a physician is willing to believe that they exist in the absence of positive blood indicators).

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About vitalsignspgh

Sandy Burkett is the Creative Engineer, President and Owner of Vital Signs. Vital Signs is a certified Native American/Woman-Owned custom sign and graphics company located in Carnegie, PA.
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