Websites and Blogs
The Sjogren's Syndrome Foundation (SSF) is the go-to resource for reliable, up-to-date information about Sjogren's. The amazing staff, and wonderful experts on the Medical and Scientific Advisory Board work on our behalf. Take time to explore the website, www.sjogrens.org. Check out the patient education brochures, conference CDs and many other resources. If you have not already joined, it is truly worth it. We are fortunate to have such a talented, hardworking, professional organization. As you can tell, I['m a proud member and a big fan!.
A wise and wonderful blog by Janet Church, Sjogren's patient and Chairman of the Board, Sjogren's Syndrome Foundation
"Those of us that live with an autoimmune disease (I have Sjögrens) fight daily to have fulfilling and productive lives. Sometimes it works and sometimes it doesn’t. This blog is a place where I can share my experiences living with Sjögrens, and share what I learn by being part of the Sjögren’s Foundation. My goal is to help the readers live each day a little bit better." ~ Janet Church
3. Online discussion groups
NOTE- These groups share ideas, information and resources. They can help you feel connected to the broader Sjogren's community. However, please remember that they do not substitute for medical advice. Please use your own judgement when deciding what is useful to you. Overall, I find the participants wise and generous. They helped inspire me to create this website.
A fairly new group, with robust discussion. Large numbers of newly diagnosed patients participate in this site. Our wonderful moderator, Robin, is not a Sjogren's patient, but has a deep understanding of chronic illness and experience with patient advocacy. She often posts links to pertinent articles and other resources on the site.
Free membership is required to join the community and its private discussions.
Long standing Sjogren's discussion-and resources-created by David Dryden, a fellow Sjogren's patient.
Others: Local online groups and in-person meetings in the US. Contact SSF for information about resources in your area.
More to follow!
November 8, 2018