Wednesday, November 28, 2018

Important New Sjogren's Website

I was excited to receive this letter from my friend and fellow member of the Sjogren's club, Dr. Sarah Schafer. In it, she announced the launch of her very important website: which focuses on information that reflects the newest research regarding appropriate diagnosis and care of Sjogrens patients. As a physician and Sjogrens patient, Sarah has a unique and valuable perspective on our disease. Future patients are already benefiting from her current presentations to educate medical students about our disease; and now with the launch and continued development of her website this invaluable information will be available globally.

Well done, Dr. Schafer.

Dear friends and health care providers,

I’m finally ready to launch the first part of my website,

I focused on Diagnosis as the first section to publish.  Based on feedback in online discussion groups,  it seems to be a high priority topic. Many patients are understandably confused about the conflicting information they get about diagnosis.   Starting off with this topic also provides a good introduction to why Sjogren’s tends to be neglected by the medical system.   

As you will see in the index (the red link in the footer), there are many pages under the topic of diagnosis.  One highlight is a step-by-step guide for PCPs.  I know from my presentations that most PCPs are unfamiliar with Sjogren’s basics.  Few are aware of common early presentations or how it is diagnosed.

I suggest starting  with the first 2 blog posts and the ABOUT link in the header.  The ABOUT section describes the unique focus of this website.   It is important to know that this is not a “living with Sjogren’s”  tips or lifestyle website and blog.  It focuses on what is needed for timely diagnosis and good care. (Bolding mine -- Julia)

It is important for me to back up statements that  I make, especially in areas that still remain controversial among some rheumatologists.  I am comfortable that my information is up-to-date and compatible with recent research, the SSF and Sjogren’s experts.    I include multiple citations, and plan to give more background /context on misperceptions, controversies and unexplored aspects of Sjogren’s in future sections.    

I have some details to iron out, such as making sure the format is compatible on mobile devices.  Tech help is coming soon, but in the meantime, the site seems to mostly work on iphones and androids.  If you have trouble, try using a desktop.  And please let me know about any glitches, so I can work on them.

I hope you find this to be a useful guide,

Sarah Schafer

1 comment:

Kelly said...

Thanks for sharing this Julia. I've been told so many times I don't have Sjogren's or any autoimmune disease because of negative test results in spite of having ongoing and multiplying Sjogren's linked symptoms that I've given up in despair. To quote the doctor who did my lip biopsy, I've got "essentially normal" salivary glands but "lots of inflammation." No one seems to be able to explain all of the very obvious inflammation in so many systems at once with no blood markers of any kind. Nor have any idea how to treat it.

I've decided just to keep playing whack-a-mole with individual manifestations (most recently Chronic Hives, GERD and Bladder Pain Syndrome), and stop chasing any overarching diagnosis. Still it's always interesting to read about other patients who get a diagnosis of Sjogren's in the face of negative test results and conflicting opinions from various medical professionals. My Optometrist was the last person to comment and he said, "I'm pretty sure you do have Sjogren's." For all the good it does me.

It's good to see you posting again! Have a wonderful holiday season in your new home with your new grandson! And of course the rest of your family, but who notices any of them when there is such a cute baby around? ;-)