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.