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Reposted by Sjogren’s Advocate

Ryan Marino, MD @ryanmarino.bsky.social · 21/05/2025

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

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Reposted by Sjogren’s Advocate

Kristina | Patient Advocate @kppatientadvocate.bsky.social · 27/04/2025

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...

dysautonomiainternational.org

Your dysautonomia may be caused by Sjogren’s disease. Here’s why that matters. | The Dysautonomia Dispatch

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Sjogren’s Advocate @sarahschafermd.bsky.social · 16/05/2025

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.

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Reposted by Sjogren’s Advocate

Julia Métraux @juliametraux.bsky.social · 09/05/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 05/05/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 17/04/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 16/04/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 16/04/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 13/04/2025

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!

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Reposted by Sjogren’s Advocate

Seeking Boston Marathon @seekingboston.bsky.social · 11/04/2025

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

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

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Sjogren’s Advocate @sarahschafermd.bsky.social · 11/04/2025

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 Advocate @sarahschafermd.bsky.social · 06/04/2025

You might want to check out my website. Here is my latest entry: www.sjogrensadvocate.com/simple

sjogrensadvocate.com

Sjogren's...Simplified | sjogrensadvocate

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Sjogren’s Advocate @sarahschafermd.bsky.social · 01/04/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 28/02/2025

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

sjogrensadvocate.com

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 27/02/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 26/02/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 04/02/2025

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

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Reposted by Sjogren’s Advocate

Sue Popkin @sjpopkin.bsky.social · 26/01/2025

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

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Reposted by Sjogren’s Advocate

Kara Wada MD FAAAAI, DiplABLM @immuneconfidentmd.bsky.social · 25/01/2025

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

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Reposted by Sjogren’s Advocate

Kara Wada MD FAAAAI, DiplABLM @immuneconfidentmd.bsky.social · 25/01/2025

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

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Sjogren’s Advocate @sarahschafermd.bsky.social · 30/01/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 25/01/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

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.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

We must address misinformation at the source. CME programs and the ACR must communicate the flaws and limitations of the current CC and explain why they do not reflect the spectrum of systemic disease. We must stop presenting them as a rigid checklist necessary for diagnosis.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

For most people with Sjogen’s, sicca is present but not their top priority. The Sjogren’s’ CC should be updated to reflect the burden of systemic disease. We must not fall back on traditional views that are no longer supported by evidence.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

The Sjogren’s CC must change to support current evidence. Just like the systemic sclerosis CC were updated to reflect systemic (non-scleroderma) manifestations, the Sjogren’s CC must also be updated. Sicca is a useful hallmark of the disease, but needs to be put in perspective.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

The current CC reinforce inadequate diagnosis, monitoring, and management of Sjogren’s Because of their overemphasis on sicca, they lead to misdiagnosis and underdiagnosis, particularly in patients with SSA-negative and systemic/non-sicca presentations.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

My pinned thread links to studies demonstrating that >80% with Sjogren’s have systemic disease as measured by the ESSDAI. These studies underestimate systemic involvement, in part by excluding non-ESSDAI manifestations, such as Raynaud’s, GI manifestations, and dysautonomia.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

Neuro manifestations (especially dysautonomia, and small fiber neuropathy), lung disease (multiple types), and joint involvement each impact over 50% but are often overlooked or misattributed to other conditions.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

The CC overweight sicca, even though systemic manifestations can be found in nearly every Sjogren’s patient if you look for them. The CC must be updated to reflect systemic manifestations, and the significant burden of systemic manifestations must be communicated with clinicians.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

Sjogren’s is a multi-system disease, never limited to sicca. 20% of people with Sjogren’s present without sicca (dryness), leading to extreme delays in diagnosis. Some people may have Sjogren’s and never develop measurable sicca.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

It is time to add systemic features to the diagnostic toolkit. Until that happens, clinicians will continue to be led astray by the Sjogren’s=Sicca myth

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

The overemphasis on testing salivary/lacrimal glands is misguided. New classification criteria (CC) are needed, but they should reflect the broad array of systemic manifestations, not double down on finding better sicca tests.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 15/01/2025

While I applaud the search for less invasive diagnostic tests for Sjogren’s, this study and other recent efforts reflect the misunderstanding of Sjogren’s as primarily a dryness (sicca) disease. 🧵 www.healio.com/news/rheumat...

healio.com

Non-invasive, saliva-based Sjögren’s diagnosis model shows good performance

A non-invasive diagnostic model, based partially on saliva samples, distinguished between patients with and without Sjögren’s disease with high sensitivity and specificity, according to dat...

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Sjogren’s Advocate @sarahschafermd.bsky.social · 31/12/2024

In October, my infusion nurse said that the infusion clinic has seen a massive increase in osteoporosis treatments.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 31/12/2024

I suspect a lot. Because clinicians are not trained about the serious, systemic manifestations of Sjogren's, it is often misdiagnosed as lupus or RA.

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Reposted by Sjogren’s Advocate

Melody Schreiber @melodyschreiber.com · 20/12/2024

I keep thinking about this chart

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