iiinova — where your digital self keeps evolving

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

I keep thinking about this chart

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Sjogren’s Advocate @sarahschafermd.bsky.social · 21/11/2024

There is a disconnect between the realities of Sjogren’s vs. how it is diagnosed and treated. Most with Sjogren’s remain undiagnosed because clinicians don’t recognize it & often don’t know how to diagnose it or manage it. A 🧵 1/

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Scott Squires @scottsquires.bsky.social · 20/11/2024

One of the great graphics from someone else on my Google Drive. drive.google.com/drive/folder...

Nurse wearing an N95 mask
Do no harm
Keep masks in healthcare
Wear a mask is harm reduction
Protect your community

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Sjogren’s Advocate @sarahschafermd.bsky.social · 19/11/2024

Inspiring follow. I love Dr Neville’s posts and the 3 wishes program.

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Julia Métraux @juliametraux.bsky.social · 18/11/2024

Did you develop Long Covid after dropping precautions bc you believed the Great Barrington Declaration that young people will be fine if they get Covid-19? Please be in touch at jmetraux@motherjones.com for a potential @motherjones.com article and reposts are appreciated.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 17/11/2024

It's Official: Sjogren's DISEASE, not syndrome, has been accepted by the international community. This better reflects the serious systemic nature of the disease, which is never limited to sicca. Learn more: www.sjogrensadvocate.com/post/new-sel...

sjogrensadvocate.com

New Self-Advocacy Tool – It’s Sjogren’s Disease

The official name change to Sjogren's disease can be used to encourage clinicians to address the serious, systemic nature of Sjogren's.

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Alexander Verbeek @alexverbeek.bsky.social · 14/11/2024

If you have any reach on Bluesky, please consider reposting so I can find old and new friends (and then I’ll follow you back 😊). I'm Alexander Verbeek and publish about the climate crisis, environment, the beauty of nature, science, walking, sustainability, wildlife, photography, water, and energy.

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Sjogren’s Advocate @sarahschafermd.bsky.social · 14/11/2024

I highly recommend this amazing resource! 🌟🌟🌟🌟🌟

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Sjogren’s Advocate @sarahschafermd.bsky.social · 14/11/2024

💯 I’m so tired of hearing people talk about the pandemic in the past tense. Covid continues to be a major death, but damage is cumulative. More and more people suffer disability from repeated infections. We know how to prevent transmission, but would rather pretend it’s over.

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DemocracyLover #BlueCrew-FBR-FBPE-NAFO 🇫🇷🇪🇺🇬🇧🇺🇸🇺🇦🇨🇦 @martie38.bsky.social · 09/11/2024

Let’s make Bluesky a safe heaven for ALL communities. No haters allowed here !

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Long Covid Advocacy @longcovidadvoc.com · 10/10/2023

Putrino Lab are on Bluesky 🙌

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The Vertlartnic @thev.bsky.social · 09/10/2023

WHO: Look, We Know We Said That It Was Not Airborne, But We’d Like To Clarify That By Denying That We Are Uncertain That It isn’t Not Not Not Not Not Not Airborne

A vaper
Headline:
WHO: Look, We Know We Said That It Was Not Airborne, But We’d Like To Clarify That By Denying That We Are Uncertain That It isn’t Not Not Not Not Not Not Airborne
Story by Ian Forsyth and Dick Connolly

Photo: https://unsplash.com/photos/YAjsL1KrbNo

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