Papercut and colored pencil art by Sheryl Aronson X 5

Thursday, May 16, 2013

Sjogren's Syndrome is Common?

I sometimes mention Sjogren's syndrome, the main autoimmune syndrome I have. Sjogren's affects the moisture producing glands in the body, the classic symptoms are dry eyes and dry mouth. For some people, that is all they have, others may have a variety of other symptoms, but not have dry eyes or mouth at all. Some people are able to continue on with all their roles in life, others become completely disabled. There have been estimates that between 1-3% of the population of the US is affected by Sjogren's. That means that this disease, which so few people have heard of, and until recently was thought to be rare, is actually pretty common.
That means that there are many, many, MANY people out there who have Sjogren's syndrome, and don't know it. For some, it is because their symptoms are mild, or they blend in with something else they have, or they figure what they feel is just a normal part of aging. Then there are all the others. The ones who know there is something wrong, and are searching for a diagnosis. On average, it takes 5-7 years for people with Sjogren's to get an accurate diagnosis. People are often told they have lupus, or rheumatoid arthritis, both of which have some overlaps with Sjogren's. There is a blood test, but not everyone with Sjogren's tests positive. I could go on and on, but you get the idea. 
Unfortunately, treatment can be haphazard, or even inappropriate if you don't have an accurate diagnosis.Also, having a diagnosis is beneficial psychologically, in that you feel 'vindicated', that you didn't imagine the symptoms, they weren't all in your head. 
On June 1st, our Northeast Ohio Sjogren's Syndrome Support Group is having a Walkabout- a short walk, since many of us, (including me, these days) are limited in how much we can walk.We are collecting money for the Sjogren's Syndrome Foundation, which will go to sponsor research grants for researchers studying Sjogren's syndrome, looking to understand it better, and for better ways to diagnose and treat it. The funding will also go to educating the public as well as the medical community about Sjogren's, so people will be diagnosed more quickly in the future.
Please go to my Firstgiving page and make a donation to help us with our mission. My tear ducts and salivary glands thank you, as does the rest of me, and all the other people affected by Sjogren's.

1 comment:

  1. Hello.
    SBH Diagnostics, a Massachusetts CLIA Lab is offering pilot testing of Sjogren’s Samples from whole blood.

    SBH Diagnostics, Inc. has a novel blood test for Sjogren’s syndrome. The SBH Diagnostic test is called EASy-Sjogren’s (Early, Accurate and Sensitive). Up to now there has been no single test that can be used to make a definitive diagnosis of Sjögren’s Syndrome in its early stages. The EASy-Sjogren’s Test is designed to provide results within 72 hours of receipt of a blood sample.

    The EASy-Sjogren’s test is based upon quantifying altered Post Translational Modifications (PTMs - phosphorylation’s) of selected proteins from patients with Sjogren's syndrome. SBH Diagnostics will develop and commercialize the Sjogren’s syndrome test under CLIA regulation and will offer it to clinicians, and pharmaceutical and biotechnology companies that desire more accurate Sjögren’s Syndrome diagnosis, clinical trials management, and pre-clinical therapeutic development.

    For further information please contact:

    Marvin A. Collin
    VP Business Development
    SBH Diagnostics