For Newly Diagnosed Patients: Getting started
This latest section for Newly Diagnosed was written as a starting guide for new patients.
Seasoned patients and those in the process of diagnosis may also find it helpful.
This page introduces the concept of comprehensive Sjogren’s care. Patients do better when they work collaboratively with their providers. Having doctors who listen to them and take their symptoms seriously is important. It is helpful when clinicians are open and humble enough to continue learning about Sjogren’s. Patients can be a valuable source of new information. They can give members of their health care team copies of Clinical Practice Guidelines, academic citations and other resources.
It is well documented that timely diagnosis and early treatment of closely related autoimmune diseases (such as RA and SLE) are key to better outcomes. This is almost certainly true for Sjogren’s. Unfortunately, this rarely happens. With inadequate studies and limited treatment options, it is easy for clinicians to fall back onto the “Sjogren’s is mild” myth, leaving patients feeling unseen and often without appropriate disease management.
This new section is only a beginning. In the next project, I plan to address working with rheumatologists, including specific strategies for dealing with misperceptions and incorrect information.
A big thank you to my two wise “Sjogren’s buddies” who gave me valuable feedback on this new section. ~ Sarah Schafer