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I am thrilled that the Sjogrens Syndrome Foundation has asked me to be the keynote speaker at the 2017 Sjogrens National Patient Conference. I spoke during the Awards dinner at the Seattle conference last year, and I am honored to speak again to our East Coast Sjogrens peeps.
Are you attending the event? The conference is March 31st-April 1st in the Philadelphia/Cherry Hill area. I’d also like your input…
Input for My Speech: 2017 Sjogrens National Patient Conference
If you read my blog, you know I speak (and ruminate) about the emotional impact of having to deal with a chronic illness on a daily basis. My perspective is always from a patient’s point-of-view. This year’s speech will continue with that emphasis and will use last year’s presentation as a foundation.
I would like your input to ensure I deliver tips, pointers, and personal commentary on your key interests. So my two questions for you are:
- If you saw the Seattle speech last year, what do you think would be a good addition for the East Coast patient attendees?
- If you are attending this year’s conference, what would you like me to share about how I manage, and adapt to, my Sjogrens?
To let me know your thoughts, please send me a comment via the Contact SjogrensLife page.
If you have not yet registered for the conference, be sure to register. You can download the brochure here. Or you can call the Foundation directly at 800-475-6473.
I look forward to hearing your thoughts and meeting you in person at the Conference!
Do you have information on Sjogren’s Central Nervous System Disease? I was diagnosed in September 2008 but have yet to see information on the CNS aspect. I have about 130 lesions on my brain. My neurologist is Robert Lisak, head of neurology at the Detroit Medical Center.The CNS involvement can be in the brain, brain stem or spinal column. I have yet to see any data in this area. Can someone direct me to a good source?
Hi Kathryn, I am not up to speed on CNS aspect of Sjogrens but I do know that the Sjogrens Foundation is getting ready to focus time and energy on it. They are starting to launch into a clinical guide that highlights CNS. Are you a member? You may want to give them a call and ask them for names of Dr who specialize in C=Sjogrens and CNS involvement. You may also want to look up last Aprils patient conference tapes because I recall their was a Dr presenting some information on CNS. I have not heard of the lesions before, so I was not aware of this aspect of Sjogrens. Good luck with your search and if you find something, please let us know more!
To add to Janet’s answer:
I highly recommend ordering the CD from presentation by Dr. Julius Birnbaum- he is a neurologist at Johns Hopkins who takes a special interest in neuro Sjogren’s. http://www.sjogrens.org/ssfstore/audio-cds
His presentation is at the top of the list. They send you a paper copy of the slides. Also, if you are anywhere near Baltimore, it could be worth a consult.