Thursday, April 2, 2015

Sjogren's Syndrome Foundation: #30Words4Sjogrens

Thanks to Christine Molloy for her tweet alerting me to the Sjogren's Syndrome Foundation's April is Sjogren's Syndrome Awareness event:

April is Sjögren’s Awareness Month and you are the voice of the Sjögren’s Syndrome Foundation. That is why this April we will be using your words to help raise awareness of the disease. Last week we asked: "If you are living with this disease or know someone who is, what one word represents 'Sjögren’s' to you?" 
For the next 30 days, we will be posting one word every day that describes what the disease means to those affected by it, along with a fact or tip that relates to the word. 
We encourage you to follow us this April and look for opportunities to share how Sjögren’s has impacted your life. Awareness comes in many different forms, which is why we hope you will share our posts on your social media pages and help make Sjögren’s a household name! 
#Day1: Complex. Sjögren’s is not a “cookie cutter” disease & affects patients differently. Many patients dry eyes, dry mouth, fatigue and joint pain, but Sjögren’s also causes dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. And while some people experience mild discomfort, others suffer debilitating symptoms that greatly impair their functioning. 
We encourage you learn more about the various symptoms of Sjögren’s by clicking here.  #30Words4Sjögrens #SjögrensAwarenessMonth #Learning2Thrive 

Continue reading here.

What words would YOU add to this list?

8 comments:

Nicole said...

My word made it on there! "Unpredictable!"

Anonymous said...

Depressing

Anonymous said...

Ruined, as in it has ruined my life

Anonymous said...

Hellish

Anonymous said...

Loss, as in loss of the life you had, loss of normal bodily functions, loss of hope of ever getting better.

Anonymous said...

Choking

jloblow said...

Annoying

Katherine Lovett said...

Precious. Because nothing makes you realize how precious life is like having a debilitating chronic illness. Just had to buy a wheelchair because of P.O.T.S. Oddly it has allowed me the ability to get out and about a bit more. So yeah, Precious, life is precious.

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