Sjogren’s Advocate

The only public communication from CDC since April 1 has been a single Twitter post promoting RFK Jr., which CDC staff described as “propaganda.” All usual notices, reports, & other forms of public communication - including information about new disease outbreaks in the US - have been blocked by HHS

Understanding dysautonomia played a significant role in advocating for my Sjogren’s diagnosis. Excellent article that dispels myths around this autoimmune disease. dysautonomiainternational.org/blog/wordpre...

This book is the perfect companion to Sjogrens advocate. I provide the medical information for self advocacy – she goes the next step and shows you what to do when you have trouble getting clinicians to pay attention and offer the care you need.

There's something called the crip tax because it's more expensive to be disabled. Tariffs rising the costs of meds and other supplies will make the crip tax even worse.

This is an amazing book. Especially if you have Sjogren’s or other complex, chronic diseases. Lots of practical tools and strategies, especially if you are dealing with unreceptive clinicians.

Excellent guest blog post by @sarahschafermd.bsky.social about the ties to #dysautonomia & #Sjogrens dysautonomiainternational.org/blog/wordpre... #sjogrensawareness #aprilsjogrensawareness

It’s important to consider the possibility of Sjogren’s in people with Dysautonomia, even if they don’t have dryness.
Timely diagnosis and treatment of Sjogren’s improves outcomes. It’s a serious, systemic disease, never just dryness.

It always makes me feel better as opposed to walking, which I do three times a week for weight-bearing but causes pain and lightheadedness from POTS. It helps that I used to teach swimming and was on a swim team in high school. I’m at home in the water and don’t mind swimming outside in cold rain.

I get too dry with a snorkel, but my main adaptation is switching strokes a lot and doing hard, kicking laps to get some of the blood out of my lower body and back up toward my brain.

I swim daily to deal with POTS, spondylitis, pain, and Sjogren’s fatigue.
I can’t swim as far as I’d like, but I’m still making it happen!

Man in a robe playing TV game show Jeopardy with words, thanks for following seeking Boston on BlueSky!

I resist the administration's inhumane cuts to NIH cancer research while I fight stage IV cancer. Thx for the follow
@raisencain.bsky.social @montanawill71.bsky.social @jperryfarm.bsky.social @twisted257.bsky.social @chiefsbride.bsky.social @kay-lo-bay.bsky.social @carolcook75.bsky.social

Thank you, Cristina for being part of an amazing team of wise Sjogrens educators and advocates. Always appreciate your incredible nutrition information.
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Sjogren's...Simplified | sjogrensadvocate

You might want to check out my website. Here is my latest entry:

www.sjogrensadvocate.com/simple

At least it’s not ivermectin!

Thank you. As an MD – patient, I work hard to help patients bridge the gap between the realities of Sjogrens vs the care they receive.
Sjogren’s is a serious systemic disease, frequently mischaracterized as a mild dryness disease.
We often need to advocate for timely diagnosis and proper care.

🙏🙏

Sjogren's Advocate Sjogren's Advocate was created by an MD-patient to help patients and achieve more timely diagnosis and comprehensive Sjogren's care.

I recommend the Smart Patients Sjogren's group and the diagnosis section of my website, Sjogrens' Advocate. Swollen salivary glands are a red flag, but most Sjögren's patients don't have obvious or palpable swelling.
www.sjogrensadvocate.com

Thanks, got it!

Hi Tom. Could you repost the link to the second page, the diagnosis algorithm? All the links on our post go to the first page. This is a great resource, thank you.

This algorithm also fits many people with Sjogrens, which has specific treatments. When can argue whether they have Sjogrens plus ME, but it’s important to diagnose, monitor and manage the specific manifestations of Sjogrens if you have it.

Hi #Sjogrens friends, advocates & researchers! Created this starter pack so we can start some conversations here. go.bsky.app/BUT9aVB

Hi #Sjogrens friends, advocates & researchers! Created this starter pack so we can start some conversations here. go.bsky.app/BUT9aVB

Sjögren’s is systemic. Nearly universally it causes fatigue and pain & can cause interstitial lung disease, dysautonomia, gastric motility issues, liver and kidney disease and so much more. It deserves to be recognized for the serious condition it is.
Where are my fellow Sjogies & allies?
3/3

Let me be clear:
• Sjögren’s is NOT rare.
• Sjögren’s is NOT mild.
• Sjögren’s is NOT localized.
• Sjögren’s is NOT a nuisance condition.
• And Sjögren’s is definitely NOT “the best autoimmune disease you could have.”
2/3

Sjogren’s is as common as rheumatoid arthritis, but massively under diagnosed and very misunderstood. It’s a terrible disease. I have dryness, but it’s not debilitating like the fatigue, dysautonomia, and pain.

Agree. Love the podcast, but please quit talking about Covid as if it were past tense. We are still in a pandemic, we just stopped documenting cases, and ignore long-term damage.

@gohealio.bsky.social

Until Sjogren’s CC reflect the realities of the disease, extreme delays in diagnosis will remain the norm, the disease will be downplayed, and systemic manifestations will continue to be overlooked.

Over half of people with Sjogren’s remain undiagnosed. Sjogren’s is not a disease of middle age; about ½ of patients surveyed report symptoms in childhood or early adulthood that are not recognized until the disease has progressed for decades, making it more difficult to treat.

The ACR & medical educators must accurately portray Sjogren's as a multisystem disease. The persistent mischaracterization of Sjogren's as a sicca disease with only occasional systemic involvement, often incorrectly stated as occurring in only 40% of cases, must be corrected.