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I received an encouraging email from the vice president of operations for the Sjogren's Syndrome Foundation last week. It seems that he had set a Google alert notification for information tagged as Sjogren's, and Reasonably Well showed up.
He commented that there was a real need for public education regarding Sjogren's:
"The more people that write about their struggles with Sjogren's, the more people will learn that this is a very serious and debilitating disease."
I agree. So, c'mon Sjoggies - share your stories, your experiences, your joys and trials with others about autoimmune disease. There are multiple opportunities out there in cyberspace, but also in the real live world. In raising awareness, we can educate health care personnel, we can support each other, and we can diminish the isolation and confusion that many undiagnosed autoimmune disease patients experience.
4 comments:
I've been getting google alerts for Sjogren's for just over 2 years now, and this repeatedly shows up anytime you mention the disorder... so yes, keep it up. Educating the public, being searchable for this kind of info... it's critical to getting the financial and societal support for what otherwise seems a total mystery or minor complaint (as if us 20/30somethings are complaining of this or that ache just like 80 year olds do)... It's awesome that the society's leaders are staying in touch, too, with people who are discussing the illness plain, simple, and honest...
I was delighted to find your blog, too. (Yea, google alerts!) After 3-plus years of UCTD/incomplete lupus, Sjogren's is now officially added to my list of dubious distinctions. It feels like the best fit yet, though I didn't realize it until reading your insightful blog and others' (Professional Patient, Chloe Conspiracy...). There's something about sharing similarities of personal experience that beats all the symptom lists from those 'dry' (sorry) medical websites. Thanks for 'telling it'!
Hi Laura and Wendy,
Greetings to fellow Sjoggies! Feel free to jump in and share your thoughts and experiences with autoimmune or any other disease. We all can learn a great deal from each other.
Hi....
I don't have an official diagnosis yet, but it's feeling like Sjogren's. I don't struggle much with dryness (oddly) but do have draft and light sensitivity. My primary symptom is FATIGUE. My Rheumatoid factor is positive, but not the other indicators.....(?)ssa/ssb?. Anyway, I'll post more when I'm official....whenever that might be. They're ruling out adrenal insufficiency and MS. I'm glad you've reached a balance in your family....with your health / energy factored in. Please keep writing! --- Spacey
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