July 23, 2011

Happy World Sjogren's Day!

World Sjogren's Day commemorates the birthday of Dr. Henrik Sjogren, who identified Sjogren's Syndrome in 1933. 

Sjogren's Syndrome is the 2nd most common autoimmune disease in the United States, affecting an estimated 4 million people in this country alone.  Sjogren's is synonymous with "dry eyes and dry mouth", but is so much more.  Yes, in Sjogren's the patient's body attacks the moisture producing glands and connective tissue which causes these common symptoms - but it doesn't end there.  We have moist tissue all throughout our bodies, and all our body's systems are dependant on these tissues.  Here is a poster put out by the Sjogren's Syndrome Foundation about just some of the possible effects this disease can have on the whole body:

A few other Sjogren's facts for you:
  • 9 out of 10 Sjogren's patients are women (though there are men out there)
  • A Sjogren's patient is 44 times more likely than an average person to develop Lymphoma
  • The typical Sjogren's patient will need about 50 times more dental work in his/her lifetime than the average person - and I think I've mentioned how extensive mine has been already
  • The typical patient being diagnosed is a woman in her 40s, but it can be found in both genders at any age (I was 15 when I was diagnosed)
  • On average, it takes 6.5 years to get a diagnosis of Sjogren's Syndrome
  • Sjogren's patients often experience 'flares' and 'brain fog', similar to many other diseases including Fibromyalgia, Lupus, MS, RA, and many more
  • A patient may have Primary Sjogrens (it is their only diagnosis) or Secondary Sjogren's (they have a comorbid conditions, such as those listed above)
  • There are limited treatment options, which focus on minimizing symptoms and slowing disease progression
  • There is no cure.
There are 3 things you can do today to spread awareness, encourage potential patients to seek diagnosis, and support research:
1. Learn something (www.sjogrens.org)
2. Teach someone (www.defythedry.com)
3. Sign up for Sips! (http://www.facebook.com/event.php?eid=183619591699575)

Thank you for reading this today and sharing it with everyone you know.  There may be 4 million Americans living with Sjogren's Syndrome - but most are not diagnosed!  They may not know there are resources to help them with their challenges - you may be the key to a better life for them.  Have a great weekend, and stay hydrated!

3 comments:

  1. Thank you for posting !!! will fan your page =)

    ReplyDelete
  2. Thank you for this informative post, Jenn! As a fellow sjogie, I appreciate you trying to educate the public an provide information. I will also spread the word about this post. Keep up your great work!

    ReplyDelete
  3. hi there,

    as someone with an immune deficiency with many of the same issues as folks with sjogrens, i would add that one thing people might want to do who have these symptoms is get their IgG, IgA, and IgM levels checked. my condition, common variable immunodeficiency, underpins a lot of autoimmune issues, like sjogrens, and IG therapy is somewhat helpful with some of the issues. (CVID folks often have multiple autoimmune issues, as i do -- and now, i have to find out whether i have sjogrens on top of it all. ugh!) but thank you for your informative post!

    ReplyDelete

I'm excited you're here - and can't wait to read your comment!

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