Author Topic: Sharing Support Group Visit  (Read 1635 times)

yodeb

  • Guest
Sharing Support Group Visit
« on: August 06, 2009, 09:02:19 AM »
Good Afternoon Everyone,

I attended the Philadelphia chapter?s Sjogren?s Syndrome support group meeting on August 1, 2009.  The meeting featured Linda Charles, RN and her Mystery Diagnosis episode that we viewed there (except the end due to DVD or equip. malfunction), but Linda talked us through the end results.  Dr. Vivino was there and spoke to us all as well and answered questions and was available to us individually afterward for questions.
Dr. Vivino announced that Philadelphia was selected as the second US site for the International Sjogren?s Registry, (SICCA),
http://sicca.ucsf.edu.  The only US site is in San Fransico, CA.  I believe he said the PA site is scheduled to start up in November.
Attendees shared their stories as well as asked questions.  I found it very informative.  My husband was with me and found it very helpful as I am just diagnosed and he learned some things he did not know, which in turn helps me!! There were samples available to take home as well as informative pamphlets and copies of past Moisture Seekers newsletters.
The Chapter announced the 2010 Walkabout which will be held on Saturday, May 1, 2010 in Tyler State Park in Bucks County PA.
 http://www.sjogrens.org/home/about-the-foundation/news-and-events/98?task=view
No date was announced for their next meeting.
I just wanted to share this with everyone as it was a real worthwhile afternoon for me and my husband.
I hope you are having a good day today!

~deb