Coming up on July 23rd is World Sjogren's Day. The following link to Sjogren's Syndrome Foundation and a Sjogren's fact sheet that can be printed out and distributed: http://www.sjogrens.org/files/Email/DefytheDry_FactSheet.pdf
World Sjogren's Day was created to commemorate the birthday of Dr. Henrik Sjogren for his discovery of Sjogren's syndrome.
Sjogren's is one of the most prevalent autoimmune diseases, striking as many as 4,000,000 people. This debilitating disease affects many lives worldwide and it is vital that together we raise awareness and educate others in the community about Sjogren's.
Thank you Bucky! I didn't know about SJS Day! I only knew about April (Sjogren's Awareness Month). I wonder if we'll hear any thing on the news? Maybe I'll send a note to the Houston stations...tip them off to a good lead ;)
Thank you for this information. Greatly appreciated.
Bella
Thank you for the Info ;) I think its important that people get educated and more aware of Sjogrens as its not very well known! I always get asked "what is that?" lol
Thank you,
I sincerely hope that next year the fact sheet could mirror some of the actual Sjogrens Centers sites which are dedicated to this disease for information. The fact sheet seems a bit light weight to me.
This is my opinion only, and does not take away from the appreciation for all of your work...again, thank you.
Re: John Hopkins
Sj?gren?s Syndrome Information
Sj?gren?s syndrome is a systemic disease in which the defining clinical features, dryness of the eyes and mouth, arise from an autoimmune process affecting the lacrimal and salivary glands. It may occur either alone or in the context of another autoimmune disease, such as rheumatoid arthritis or systemic lupus erythematosus. Sj?gren?s syndrome is one of the most prevalent systemic rheumatic diseases with a unique predilection for post-menopausal women. The disease may affect the nervous system, lungs, and kidneys in addition to the exocrine glands. Chronic fatigue, joint pain, and neuropathic pain are significant sources of disability. Late complications may include blindness, dental destruction, oral candidiasis, and non-Hodgkin lymphoma.
http://www.hopkinssjogrens.org/disease-information/
I agree it is a bit light. The information on the mayo clinic site is even worse. But, at least it's something. I still think no one could do a better job at communicating Sjogren's than Sjogren's patients. I can't wait to find a doctor that actually has Sjogren's - wouldn't that be a dream (at least on the days they're not flaring and able to treat me! ha!). I'd be getting some really good treatment then.
Even though we see folks that have studied medicine and are now practicing - I still don't think they really "get it".
Thanks for the "heads up.". I am going to try to think of something I can do on that day to contribute to increased awareness. If I come up with any decent ideas I will share them here. Perhaps we can all post ideas we have to this discussion.
I'm sure we won't make the evening news, but TODAY is World Sjogren's Day.
Prior to being diagnosed with this strange sounding "syndrome", none of us had even heard of Sjogren's. Now, through our daily life with Sjogren's and this forum, we are connected with fellow Sjogren's patients from literally around the world.
Whenever you are given the opportunity, "enlighten" others about Sjogren's - as we all know, there is presently no cure for this, BUT we can learn coping skills and through the marvel of medicine, we can help to maintain Sjogren's. When talking about Sjogren's we don't necessarily have to go into all the hardcore nitty gritty of it all, but others should also know that it's more than just a cold and after it runs it course it will get better and go away.
Feel free to print out the attached fact sheet (at the very beginning of this thread) and spread the news about Sjogren's Syndrome.
May each of you be blessed on your Sjogren's journey - remember, when you come here to this forum "we get it"!!
Bucky
Very Well Said Bucky...My Many Thanks For Your Hard and Deligent Work...~sass~
I just posted a brief comment about World Sjogren's Day and the link to this fact sheet on FB. I hope at least a few people will read and hopefully share.
I've posted on my fb. I have a lotta "friends" so there's a few hundred people that see it.. Whether or not they care enough to read and process I can't speak for that :/ I know a few close ones will tho
Modified to say people are sharing my link! Niceeeee
I have sent a "reminder" to our local news stations letting them know they have viewers that don't realize they have Sjogren's and that it's not just dry eyes and mouth.
I hope they say SOMETHING however little it may be.
Of course, considering recent events and the news coverage, they may not mention a thing anywhere about it.
Thank you for the reminder...much needed.
The least I can do is to post it on the bulletin boards at the local food marts and library.
Wishing everyone strength in numbers.
I got an amazing response to my blog post today about World Sjogren's Day, so I hope that means interest is growing!
I did see a few news articles. A couple of them said it was the first World Sjogren's Day which I thought was strange, but I guess it's the first since Venus Williams's diagnosis made people aware that Sjogren's exists.
I also saw a great video featuring UK football (soccer) player Stephen McPhail promoting the day: http://www.youtube.com/watch?v=Z31QGU_Kl2s&feature=youtube_gdata_player
Bless his heart - his mouth was so dry, and he looked really tired. He mostly talked about the dryness, that was a bit dissapointing. Some people have no dryness but suffer from fatigue and pain with no idea they have Sjogren's.
Have any of you seen anything on TV? I would think that if all the sjogren's organizations around the world have truly gotten together, that that would have joined in buying a public service video of sorts to air.
Maybe next year.