A hard truth for many #sjogrens patients. The Invisible Kingdom was such a validating read for me. Highly recommend.

Fatigue in Sjögrens can be overwhelming and debilitating. Check out this presentation by Prof Wan-Fai Ng: youtu.be/qwbPKuf1h34?si…
#Sjögren sAwarenessMonth #Sjögren #Sjögren Europe #Sjögren Disease #timeforchange

April is #SjogrensAwareness Month. I was diagnosed 4 years ago at 47. Sjogren's is a complex systemic #autoimmunedisease that impacts the entire body. It can be debilitating & greatly impacts patients' quality of life. #thisissjogrens

#Sjogrens is the only systemic autoimmune illness w/o even a single #CAR -T trial (outside China). But no MD or organization is fighting for it. They don't want to cure it?
They mentioned only Descartes-08, which cant cure you, & still no trials.

April is Sjogren's (SHOW-grins) awareness month.

There are lots of myths about Sjogren's in the medical community and public that are barriers to diagnosis & care.

Please help me advocate for Sjogren's by interacting with, commenting on, & sharing my posts.

#ThisIsSjögrens

We're delighted to launch our new Sjögren's Ireland WhatsApp support group in time for Sjögren’s Awareness Month in April.

The group is aimed at those living in Ireland 🇮🇪 who have #Sjögren 's, who have suspected Sjögren's, or who are caring for someone with Sjögren's.

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Our journey so far wouldn't have been possible without our member countries. We look forward to the years ahead and hope we can keep thriving, having more European countries joining our efforts to build a brighter future for Sjögren's patients. We're stronger together. THANK YOU!

Omitting small fiber neuropathy from the Sjogren's ESSDAI unfairly excludes patients with Sjogren's and neuropathy from vital trials, denying them access to new, effective treatments. This oversight leaves them without potential benefits when these medications become available,…

April is Sjogren's (SHOW-grins) awareness month. There are lots of myths about Sjogren's in the medical community & public that are barriers to diagnosis and care.

Please help me advocate for Sjogren's by interacting with, commenting on, & sharing my posts.

#ThisIsSjögrens

April is Sjogren's (SHOW-grins) awareness month. There are lots of myths about Sjogren's in the medical community & public that are barriers to diagnosis & care.

Please help me advocate for Sjogren's by interacting with, commenting on, & sharing my posts.

#ThisIsSjögrens

Advances in Sjögren's research have been notorious in most recent years, giving us hope for a brighter future.
We are happy to share with you a presentation by Prof Vasco Romão: youtu.be/YQgQ0WFc7hA?si…
#Sjögren sAwarenessMonth #Sjögren #Sjögren Disease #patientsmatter

Not a single doctor is truly interested in CAR-T for Sjogrens. This means they all still consider Sjogrens less severe than Lupus etc. Horrible.

Seronegative Sjogren’s

Initial symptoms:
•chronic Migraines & Headaches
•feeling feverish (& chills) •Excessive sweating day & night
•episodes intense full body itching
•abdominal pain & upper gastric pain
•foot pain-plantar fasciitis
•burning foot pain
•exhaustion

We’re so honoured to be involved with Sjögren’s Europe

This can definitely apply to #Sjogrens #dysautonomia #POTS ,gaslighted by 95% rheumatologists &other specialists. And unlike MECFS the damage to glands,organs is irreversible. #RheumTwitter
My impression is that most rheums have no clue about how low QoL is in dysautonomia/Sjogrens

April is #SjogrensAwarenessMonth ! Sjogren's is the 2nd most common cause of autonomic neuropathy, but 75% of patients remain undiagnosed. Sarah Schafer MD MPH of Sjogren's Advocate, offers great resources on how Sjogren's is diagnosed:
sjogrensadvocate.com/myths-about-di…

April is Sjogren's (SHOW-grins) awareness month.

There are lots of myths about Sjogren's in the medical community & public that are barriers to diagnosis & care.

Please help me advocate for Sjogren's by interacting with, commenting on, & sharing my posts.

#ThisIsSjögrens

This is so true. #sjogrens

Something new every freakin time I get labs done. I need a hug and a milkshake.🥺 #Sjogrens