New video on SFF website

[Liz D.]

I just viewed a new 30 minute video on the Sjogren's Foundation website that I found very interesting and informative.  I think it will be great to share with family and friends.  I believe the address is www.sjogrens.org.  The video is called 'a place to begin.'

Thought some of you might want to check it out.

Liz D.

[ohiolady]

Liz,

I watched the video and found it very interesting.  A few of the things they mentioned were cognitive impairment and gastroparesis, both of which I have.  My rheumatologist does not acknowledge either of these.  She thinks Sjogrens is arthritis, rashes, dry eyes and dry mouth.  My doctor is very thorough and I like her but it does frustrate me that there isn't a general concensus about the whole scope of symptoms that Sjogrens can present.

Looking forward to comments from others on the discussion in this video.

Anna

[navydad]

watched Mystery Diagnosis last night,, poor lady only took 50 years to get diagnosed,, ya 50 years,,

[Shani]

Thank you for sharing Liz.

[navydad]

Well I watched the video and have to say for the most part it was pretty good,, I only wish they could have gotten one of the worst of the bunch and show what can REALLY happen with this disease,, and they should rename it to Sjygrons Syndrome Disease, syndrome sounds like something benign,, its a dam disease,, they said 1/3 get this,, 1/3 get this and that,, and the other 1/3 get it bad,,, and they also said that men are probably under diagnosed,, like we cant get it either,, My Rheummy was right two years ago,, when we saw him in May of 08,, I asked him one question before he said a word,, do you think Im crazy,, he said NO,, this is real,, you have Sjygrons,, you dont have the markers,, but you have it,,
  so were back to the age old question of this disease,, do we have a sicca syndrome,, (no bloodmarkers), or are we sereonegative,,

[SueAnn]

I just got a letter from the SSF saying that the video would be on their website and also sent free of charge to Rheumatologist to present to paients.   I only hope the rheumatologist will watch it.  They are also creating clinical practice guidelines, but do not say when it will be out.

Sue Ann

[Catilee2]

Thank you will watch it after I come home from a meeting I am attending this evening.

Catilee 2

PS to Navydad. according to recent research articles in PubMed, they are thinking of renaming Sjogren's to epithelialitis or something like that because of all the different organs with epithelial  tissue that can get affected by it.