Website - core features
Updated: Aug 9, 2020
Welcome to the many new subscribers. Please read this post even if you are not new!
Why This Website Exists – Sjogrens Advocate focuses on strategies that can help you get the best care possible. Even as an MD, I had a very difficult time getting a diagnosis and comprehensive care. This frustrating experience inspired me to help other patients and PCPs navigate this complex disease.
Not Intended for Individual Medical Advice – Emails are welcome for comments, suggestions, and website requests, but please do not ask for individual medical advice (disclaimers). Each patient has a unique set of needs. Sjogren’s diagnosis and treatment can be extremely challenging.
Research and Authenticity – The content of Sjogrens Advocate is based on an in-depth reading of journal articles (hundreds!) and current textbooks. I also take advantage of the many excellent materials and lectures available through the Sjogren’s Foundation. I back up my writing with citations. The Key Articles page provides a description of core clinical concepts that clinicians should be aware of. Links to Citations and Key Articles are available in the footer of each page.
Advocacy Due to Sjogren’s Neglect – Like most Sjogren’s patients, I have encountered numerous clinicians who know very little about the disease. Rheumatologists are the core specialists in charge of Sjogren’s care. Yet many patients report being treated dismissively by disengaged rheumatologists who are not up to date. This is unfortunate, given the serious systemic nature of the disease. Sjogren’s Neglect I–IV (blog series, August and September 2019) details the disturbing lack of Sjogren’s education at all levels. Reading these blog posts can help you understand why Sjogren’s is so misunderstood.
Content Is Independent but Complementary to the Sjogren’s Foundation – Sjogrens Advocate is intended to complement the much broader resources and materials provided by the Sjogren’s Foundation (SF). My work is independent of the SF and I take full responsibility for my content. I do encourage everyone to join the Foundation. My next blog post will include some highlights from their website, www.sjogrens.org, as well as tips for using this website and blog.
Blog Is Informational and Not Set up for Discussion – You may notice that the blog comments are disabled. This educational website is not meant to be an online discussion group. For this, you may turn to the Smart Patients online community, your local support group, or other resources.