Sjogren’s Advocate
@sarahschafermd.bsky.social
Medical educator, MD-patient.
I debunk Sjögrens myths.
www.sjogrensadvocate.com - I show people with Sjogren's how to use credible resources to advocate for timely diagnosis and comprehensive care for this complex, multisystem disease.
I debunk Sjögrens myths.
www.sjogrensadvocate.com - I show people with Sjogren's how to use credible resources to advocate for timely diagnosis and comprehensive care for this complex, multisystem disease.
Pinned
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/
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/
Reposted by 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
Some of the CDC's main channels for communicating urgent health information to the public have gone silent.
Diseases are spreading. The CDC isn't warning the public like it was months ago
Some of the CDC's main channels for communicating urgent health information to the public have gone silent.
www.npr.org
May 21, 2025 at 8:05 PM
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
Reposted by Sjogren’s Advocate
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...
Your dysautonomia may be caused by Sjogren’s disease. Here’s why that matters. | The Dysautonomia Dispatch
dysautonomiainternational.org
April 27, 2025 at 3:25 PM
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.
Honored to be in @sarahschafermd.bsky.social recent newsletter. Her kind words about my book have me smiling from ear to ear! #autoimmunelife #sjogrens #patientadvocate
May 16, 2025 at 6:39 PM
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.
Reposted by Sjogren’s Advocate
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.
May 9, 2025 at 5:07 PM
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.
Honored to be in @sarahschafermd.bsky.social recent newsletter. Her kind words about my book have me smiling from ear to ear! #autoimmunelife #sjogrens #patientadvocate
May 5, 2025 at 3:38 AM
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.
Reposted by Sjogren’s Advocate
Excellent guest blog post by @sarahschafermd.bsky.social about the ties to #dysautonomia & #Sjogrens dysautonomiainternational.org/blog/wordpre... #sjogrensawareness #aprilsjogrensawareness
The Dysautonomia Dispatch | The blog of Dysautonomia International
dysautonomiainternational.org
April 17, 2025 at 5:00 PM
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.
Timely diagnosis and treatment of Sjogren’s improves outcomes. It’s a serious, systemic disease, never just dryness.
April 17, 2025 at 7:22 PM
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.
Timely diagnosis and treatment of Sjogren’s improves outcomes. It’s a serious, systemic disease, never just dryness.
Reposted by Sjogren’s Advocate
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
@raisencain.bsky.social @montanawill71.bsky.social @jperryfarm.bsky.social @twisted257.bsky.social @chiefsbride.bsky.social @kay-lo-bay.bsky.social @carolcook75.bsky.social
April 11, 2025 at 3:21 AM
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
@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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#sjogrens resources (more): @sarahschafermd.bsky.social @neurosjogrens.bsky.social @sjogrensspeaks.bsky.social @sjogrensforum.bsky.social
Share Sjogren's Elevator Pitch www.sjogrensadvocate.com/_files/ugd/8...
#sjogrensawarenessmonth
Share Sjogren's Elevator Pitch www.sjogrensadvocate.com/_files/ugd/8...
#sjogrensawarenessmonth
April 11, 2025 at 3:35 AM
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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Reposted by Sjogren’s Advocate
Hi #Sjogrens friends, advocates & researchers! Created this starter pack so we can start some conversations here. go.bsky.app/BUT9aVB
January 26, 2025 at 11:28 PM
Hi #Sjogrens friends, advocates & researchers! Created this starter pack so we can start some conversations here. go.bsky.app/BUT9aVB
Reposted by Sjogren’s Advocate
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
Where are my fellow Sjogies & allies?
3/3
January 25, 2025 at 12:29 AM
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
Where are my fellow Sjogies & allies?
3/3
Reposted by Sjogren’s Advocate
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
• 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
January 25, 2025 at 12:29 AM
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
• 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
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...
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...
www.healio.com
January 15, 2025 at 1:17 AM
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...
Highly recommend this app.
January 9, 2025 at 6:00 AM
Highly recommend this app.
Wow
Breathtaking and heartstopping at the same time. Thanks for sharing @gregpak.net
Song in my head tonight. This has become the definitive version of this song for me. youtu.be/67pyIglP79U?...
December 24, 2024 at 3:48 AM
Wow
Reposted by Sjogren’s Advocate
I keep thinking about this chart
December 20, 2024 at 4:49 PM
I keep thinking about this chart
Great follow!
Can you help me get @3wishesprogram.bsky.social to 1000 followers? We all can use more kindness in this world!
December 2, 2024 at 6:24 AM
Great follow!
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/
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/
November 21, 2024 at 5:12 PM
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/
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/
Reposted by Sjogren’s Advocate
One of the great graphics from someone else on my Google Drive.
drive.google.com/drive/folder...
drive.google.com/drive/folder...
November 20, 2024 at 1:07 AM
One of the great graphics from someone else on my Google Drive.
drive.google.com/drive/folder...
drive.google.com/drive/folder...
Inspiring follow. I love Dr Neville’s posts and the 3 wishes program.
Woohoo, @3wishesprogram.bsky.social has 300 followers in a weekend!
November 19, 2024 at 4:11 AM
Inspiring follow. I love Dr Neville’s posts and the 3 wishes program.
Reposted by Sjogren’s Advocate
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.
November 18, 2024 at 3:56 PM
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.
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...
This better reflects the serious systemic nature of the disease, which is never limited to sicca.
Learn more: www.sjogrensadvocate.com/post/new-sel...
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.
www.sjogrensadvocate.com
November 17, 2024 at 3:15 PM
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...
This better reflects the serious systemic nature of the disease, which is never limited to sicca.
Learn more: www.sjogrensadvocate.com/post/new-sel...
Reposted by Sjogren’s Advocate
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.
I'm Alexander Verbeek and publish about the climate crisis, environment, the beauty of nature, science, walking, sustainability, wildlife, photography, water, and energy.
November 14, 2024 at 9:09 AM
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.
I'm Alexander Verbeek and publish about the climate crisis, environment, the beauty of nature, science, walking, sustainability, wildlife, photography, water, and energy.
I highly recommend this amazing resource! 🌟🌟🌟🌟🌟
The Sick Times--a digital long-COVID newspaper--is 1 yr old today. I couldn't be prouder of what Betsy, Miles, and their team have accomplished. thesicktimes.org/2024/11/14/p...
If you have the means, pls join me in supporting their end-of-year fundraiser. the-sick-times.fundjournalism.org/donate/
If you have the means, pls join me in supporting their end-of-year fundraiser. the-sick-times.fundjournalism.org/donate/
Press release: The Sick Times announces one year of covering the Long COVID crisis - The Sick Times
“Our reporting on Long COVID remains as vital today as it did when we launched,” executive editor Miles W. Griffis said. “Many of our colleagues in the media continue to minimize the disease and the o...
thesicktimes.org
November 14, 2024 at 8:04 PM
I highly recommend this amazing resource! 🌟🌟🌟🌟🌟
Great follow👇
November 14, 2024 at 4:58 AM
Great follow👇