AMA @amadams121
Facts 1st. Be kind. Civil discourse=learning opp. sci-fi fan. Opinions expressed are my own. #sjogrens #lupus. [email protected] Gillead 😡 Joined July 2015-
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Surveys of people diagnosed with Sjogrens in middle age find about 1/2 identify symptoms starting in childhood or early adulthood. Sjögrens is not a disease of middle age, it just takes decades to diagnose. We need better tests and treatment.
Surveys of people diagnosed with Sjogrens in middle age find about 1/2 identify symptoms starting in childhood or early adulthood. Sjögrens is not a disease of middle age, it just takes decades to diagnose. We need better tests and treatment.
April is #SjögrensAwarenessMonth
Hot take: Lack of diagnosis in young people says more about the lack of diagnostic criteria than about the prevalence of the disease. Sjogrens is always systemic. #sjogrens
Hot take: Lack of diagnosis in young people says more about the lack of diagnostic criteria than about the prevalence of the disease. Sjogrens is always systemic. #sjogrens
Although pediatric #Sjogren Disease, or diagnosis of SD before the age of 18 years, was previously considered quite rare, cases are increasingly reported. ~ Unique Aspects of Pediatric Sjögren Disease #SjogrensAwarenessMonth ncbi.nlm.nih.gov/pmc/articles/P…
NEW Clinical Trial | Sjogren's syndrome #SS | Ultra-High Frequency Ultrasonography in Sjögren's Syndrome (UltraSjögren) | Recruiting | University of Pisa, Pisa, Italy | #clinicaltrials | #SjogrensAwarenessMonth | buff.ly/4aEvmDW
Epidemiology of Sjögren syndrome In the United States, Sjögren syndrome is estimated to be the second most common rheumatologic disorder, behind SLE. Sjögren syndrome affects 0.1-4% of the population. ~ Medscape 2021 #SjögrensAwarenessMonth buff.ly/3wlNIst
April is #SjögrensAwarenessMonth
Complications of Sjogren's Syndrome, Digestion, Joint pain, Pain and fatigue, Bladder, Candida, Sleep concerns, Lymphoma these are just some of the topics that you can find at Sjogren's Syndrome info website buff.ly/2pN37z7
#SjogrensAwarenessMonth It was estimated that in 2018 there were around 2.3 million people worldwide living with Sjögren’s syndrome. This number is predicted to increase to 2.5 million by the year 2027. buff.ly/2XkAMEc
Sjogrens is not rare, just rarely diagnosed, impacting 3-4 million people w/ Sjogern's in the US alone, according to @SjogrensOrg Learn why lowball numbers are inaccurate, misrepresent the disease, and how we know most remain undiagnosed: sjogrensadvocate.com/sjogrens-is-co…
Sjogrens is not rare, just rarely diagnosed, impacting 3-4 million people w/ Sjogern's in the US alone, according to @SjogrensOrg Learn why lowball numbers are inaccurate, misrepresent the disease, and how we know most remain undiagnosed: sjogrensadvocate.com/sjogrens-is-co…
Most people with Sjogren's are undiagnosed, or misdiagnosed with other conditions. Learn more about myths that get in the way of diagnosis, and how to counter them with self-advocay tools: sjogrensadvocate.com/myths-about-di…
Most people with Sjogren's are undiagnosed, or misdiagnosed with other conditions. Learn more about myths that get in the way of diagnosis, and how to counter them with self-advocay tools: sjogrensadvocate.com/myths-about-di…
Neurology struggles when there's Neuro damage in "too many places" (localizations) bc they lack the concept of Systemic Neurologic Diseases (that can attack any/everywhere in the nervous system.) And bc patients get partitioned in Neuro subspecialty silos-they cant see big pic.
Sjogren's is not rare, just rarely diagnosed. Often misdiagnosed as fibromyalgia, RA, IBS, or "FND". People often spend years, sometimes decades, before getting a proper diagnosis. It's a serious systemic disease, never "just sicca". sjogrensadvocate.com/post/why-is-it…
Sjogren's is not rare, just rarely diagnosed. Often misdiagnosed as fibromyalgia, RA, IBS, or "FND". People often spend years, sometimes decades, before getting a proper diagnosis. It's a serious systemic disease, never "just sicca". sjogrensadvocate.com/post/why-is-it…
Fatigue impacts 80-90%. It’s not normal tired, but profound & debilitating. I have many other Sjogrens symptoms, but I lost my career because of fatigue. It is biologically based and the top unmet patient need. We need better research and treatments. 🙏 Dr. Ng for your work.
Fatigue impacts 80-90%. It’s not normal tired, but profound & debilitating. I have many other Sjogrens symptoms, but I lost my career because of fatigue. It is biologically based and the top unmet patient need. We need better research and treatments. 🙏 Dr. Ng for your work.
Sitting here in OP surgery waiting room as urologist is checking hubs to make sure he doesn't have any more 1/2” kidney stones blocking the way.
GOP in OK trying to criminalize both vaccines that prevent infections and even cancer while also criminalize being infected with same and spreading it to others. webserver1.lsb.state.ok.us/cf_pdf/2023-24… Why is this not in the news? #gilead @NoLieWithBTC @MSNBC @TYT
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
Arthrogram today confirmed torn labrum, which ortho was concerned about. Being the overachiever that I am, I also scored calcific tendinosis rotator cuff tendon, more chronic tendinitis/tendinosis, & partial thickness tearing of supraspinatus & subscapularis. 🥴🤦♀️
Arthrogram today confirmed torn labrum, which ortho was concerned about. Being the overachiever that I am, I also scored calcific tendinosis rotator cuff tendon, more chronic tendinitis/tendinosis, & partial thickness tearing of supraspinatus & subscapularis. 🥴🤦♀️
Fatigue, often profound, and cognitive dysfunction impact most people with Sjogren's & may have a devastating impact on QOL. Sicca is bad, but I lost my career and ability to do most of the things I love because of these things. These need to be a research priority.
Fatigue, often profound, and cognitive dysfunction impact most people with Sjogren's & may have a devastating impact on QOL. Sicca is bad, but I lost my career and ability to do most of the things I love because of these things. These need to be a research priority.
Sewlairsl @SewlairslBmSET
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3 Followers 366 Following Found different beauties from all US states 😽 Ready for private meetings Nudes in profile! Watching this https://t.co/1OZS71xFjx
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213 Followers 2K Following We are in favor of a safe regulated supply of FDA approved prescription medications. Check link and get a safe supply now
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10 Followers 45 Following #chronicillness #chronicpain #autoimmune #sjogrens #diabetes #hypothyroidism #migraine
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630 Followers 2K Following In god soul are made from All the poor shall enjoy one day ✝️✝️✝️✝️🔜
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Natasha⚕️Former C.. @seductivcarnag1
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48zitsdoqm @sdoqgm3854oj7
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1K Followers 5K Following Be kind, compassionate, and forgiving to each other, in the same way God forgave you in Christ.✝️✝️
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Dan 🇺🇦🌻 Fact.. @DanRobDataGuy
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modou lamin @modou92
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Mita 🌊 💙 @SuperMita_
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MassMediaEnjoyer🇺�.. @MassMediaEnjoyr
35K Followers 38K Following Ultra-Mega Pro-Biden Patriot. Try to see the world thru the eyes of folks frm a demographic other than our own. I want justice! Civil Rights for all! DMs? Nah.
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410 Followers 1K Following ♦️Strictly licensed®ulated ♦️Global leading trading platforms ♦️Well-established social trading network ♦️Excellent trading service StartTrading👇
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TwistedKat ♿️ @KatTwisted
1K Followers 966 Following #MyotonicDystrophy #CRPS 💚cash app $2twistedtwice ~Current needs Wishlist~https://t.co/b408X0KySW
blueman2 - music maes.. @bluertwo
54K Followers 38K Following I’m married to my best friend❤️@Morerles lifelong democrat, love all animals,, I like to pair music 🎶,, #resist #voteblue no DMs! no Crypto , no MAGA!
Mike Bolin @BolinMike
3K Followers 5K Following Teacher....Book Lover....Broncos,Rockies,Avs, and Suns fan...Married to Robin..Forever a LOBO…Fan of Rush…Van Halen…Beatles Forever and Good Movie kinda Guy🔥
Maxinem 👀🎭⚖�.. @Maxiemarg
1K Followers 2K Following Boomer and Native New Yorker 🍎 Compassionate human. No DMs please. 💙🦋🇺🇸🌊🌊🌊🏳️🌈
evnz463ukygjd @ndig6205tisuxt
49 Followers 1K Following Tiktokshop conducts recruitment for part-time partners! Salary $100-$300 per day, please contact us https://t.co/q5MKLu8bC4
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671 Followers 1K Following Accessibility Ops Manager | #Autistic blogger - sister No.2 from The Wyrd Sisters | Welsh 🏴 | All views are my own
Terri Williams @Terri_52
470 Followers 971 Following Retired writer/editor; worked in communications for large global company. Views my own. Living well while facing challenges with #rheum #sjogrens #autoimmune
Katongole Lincoln @KatongoleL46581
952 Followers 5K Following "I found peace in Jesus, Orphans are my family, caring and building for they better life in Godly way is my purpose,
Right Wing Watch @RightWingWatch
373K Followers 491 Following A project of People For the American Way that monitors and exposes the activities of Radical Right political organizations.
Syd @fcknsyd
2K Followers 1K Following 24 year old who’s life is currently on pause because of #LongCovid since April 2022 #POTS #Dysautonomia #MECFS #hEDS @CadAgainstLC
Kendra F @SurvivingCFS
4K Followers 5K Following Disabled for a decade due to MECFS| Escaped homelessness | I’m advocating for those who can’t | See highlights tab for my free masking and disability art.
NotMyNiceVolunteerLad.. @MamaFejDL
252 Followers 786 Following Wife. Mom. Woman who has had more than enough. Fighter for what’s right. Chocolate lover. Supporter of the disenfranchised. Also really, really tired.
Elgato @elgato
1.2M Followers 1K Following Stream. Record. Create. | Empowering content creators since 2012 | @ElgatoSupport for tech support
🇺🇸 Moosedog �.. @SanBound
2K Followers 3K Following Mom | Grandma | Legal Assistant | Recovering Catholic | Agnostic
Candace D. @DiaryofaSickGrl
12K Followers 1K Following Wife. Mother. Dog mom. Chronic illness advocate. 🥄♥️ #hEDS, #MCAS, #POTS, #foodallergies, #cornallergy, etc.
Sjogren's Woman @SjogrenWoman
10 Followers 45 Following #chronicillness #chronicpain #autoimmune #sjogrens #diabetes #hypothyroidism #migraine
UnitedHealth Group @UnitedHealthGrp
40K Followers 622 Following Helping people live healthier lives and helping make the health system work better for everyone. Media inquiries: https://t.co/ThZff5rnva
Ron Morgan @rrmorganvt
5 Followers 2 Following
ChronicIllnessHumor @HumorChronic
991 Followers 3K Following Chronic Illnesses + Autoimmune Disorders R no laughing matter but my humorous posts will make U feel better for a while. #chronicillness #autoimmune #funny
Mt. St. Helens @MtStHelensWA
116K Followers 0 Following I’m here to explain myself. #parody Team Mt. St. Helen’s store ⬇️
Work Chronicles @_workchronicles
130K Followers 185 Following 👋 Hello. I make comics about work, with love & lots of coffee. Follow to get the comics in your feed. Join the Newsletter: https://t.co/TnlvMdBJ1K
Zed Zha, MD, FAAFP is.. @DrZedZha
25K Followers 6K Following Physician | Writer | Freelance OpEd contributor | WIP on medical rape culture rep'd by @knwillms | NERFC fellow | Dartmouth grad | FQHC | #AskThePatient polls
mouse-that-roared @clpthom
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CoRE Mount Sinai @CoRESinai
502 Followers 2 Following The Cohen Center for Recovery from Complex Chronic Illness (CoRE) advances treatment and knowledge of Long COVID, Chronic Lyme, ME/CFS, and hEDS.
THIRTY SECONDS TO MAR.. @30SECONDSTOMARS
1.7M Followers 3 Following SEASONS WORLD TOUR - TICKETS, VIP & MORE INFO 👇🏻 SHOP MARS MERCH @marsstore
Cat Herding Science N.. @catladyactivist
18K Followers 11K Following Plant-fueled 🌱 religion-free 🕊 healthcare for all ⚕️ leave it better than you found it 🌏 equity in all things ⚖️ #CovidIsAIRBORNE 😷
Saint Louis Zoo @stlzoo
107K Followers 663 Following One of the few free zoos in the nation, the Saint Louis Zoo is home to over 16,000 animals, representing 500 species. #stlzoo
KPLR11 @KPLR11
39K Followers 428 Following The official Twitter page for KPLR11 in St. Louis, MO. News, sports, weather, entertainment and more! Follow our reporters for more updates.
St. Louis County PD @stlcountypd
74K Followers 934 Following Official Twitter of the St. Louis County Police Department. Account not monitored 24/7. Non-emergency: 636-529-8210. If you have an emergency, call 911. 🚔👮🚁
Brad @Bradgolf1216
3K Followers 2K Following Bachelor of Biological Science Degree. #LongCovid #TeamAutoantibodies #Bc007. Any tweet is my opinion and not medical advice. Check out my podcast on Spotify
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287 Followers 978 Following Human barely being. A decade of life lost to Severe ME. Formerly: NY creative director. Loved and miss friends, music, mountains, running and my road bike.
Red @RedIsND
602 Followers 578 Following #AuDHD #OCD with physical disabilities, here to connect with fellow neurodivergent and disabled folks - 🏳️🌈 #wearAMask #CovidIsNotOver #FreePalestine
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1K Followers 1K Following mother, educator, author, #health #nature #meditation @UTAustin alum @NewhouseSU alum. Views are my own.
KPK @KPKellyNC
175 Followers 129 Following Supporter of a much-needed #Sjogrens rebranding campaign. Not just sicca. Systemic autoimmune disease.
Neuro Sjo @neuropsychSjo
484 Followers 1K Following Research : ~ up to 55% of CIDP, POTS, SFN, MG, MECFS, NMO, long COVID & other neuro pts have Sjogrens Most clinicians : Sjogrens is just dry eye & dry mouth!
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13K Followers 1K Following Proud mom of Emily, Evan, and Ethan. Working hard every day to honor the life of Ethan and to #keepkidssafe - Help us pass @Ethanslaw2 to save lives!
Brain Inflammation Co.. @BrainInflCollab
812 Followers 47 Following We are organizing a coordinated research effort to revolutionize the diagnosis and treatment of #neuroinflammation illnesses and #mentalhealth symptoms.
Trex Attitude🦖💙.. @trexattitude
751 Followers 4K Following Long CV-8/22❤️🦮🐈, all animals, ✊🏿🏳️🌈, nature, oceans, spirituality, hope, peace, truth, scuba, rock climbing, camping, Xsports, 🎿🥾, life, humanity
GC @ThePOTSPostman
5K Followers 1K Following Just a mailman with #POTS. Here to spread awareness and advocate for those with #dysautonomia #chronicillness
Dan 🇺🇦🌻 Fact.. @DanRobDataGuy
2K Followers 4K Following T1D TSlim/Dex ❤️Cats🚫tfg🚫MAGA /Sustainability 🌱🍅🌻#Climate🌎 #BLM #LBGTQ+💛💚🧡#Ally #Diabetes 💪#Insulin4All 😇 #FBR #Dem🌊🌊💙#JusticeMatters⚖️ 💜Kindness
MuggleNet: #1 Wizardi.. @MuggleNet
329K Followers 358 Following The #1 Wizarding World Resource Since 1999 ✨ RT’s are not endorsements. https://t.co/onLdXZyXtU
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5K Followers 4K Following Director, Postgraduate Degree Artificial Intelligence + Research Methodology @UniBarcelona. Autoimmune Diseases @hospitalclinic. #BigData #AI
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130 Followers 604 Following
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770 Followers 707 Following Professor and Head Department of Clinical #Immunology and #Rheumatology at @HospitalBharati. Director Internal Medicine and Rheumatology, @shlpune.
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398 Followers 61 Following
Mita 🌊 💙 @SuperMita_
51K Followers 52K Following #AprilNineteenEightyNine ||| #StrongerTogether 💙 ~ #BlueCrew 🌊 ||| Fully vaxxed and boosted ||| 🎧 to #WMJX 106.7 ||| No DMs please 🙏
@HootPhD The woman who invited you was polite. You were frank. The person nearby was meddling.
@TJKashin @debpeaves @HootPhD I don't answer the door unless I'm expecting a takeaway 😂 Ended up hiding behind the door a couple of years back as I clocked them coming up the path as I was passing the window 🤦♀️
@Jimmydeuce1234 @HootPhD You know we don't actually hate your religions, right? In exactly the same way we don't hate the Jedi, or King Oberon, or dragons.
@HootPhD “Would you like to come to my stamp-collecting meeting?” “No thanks, I don’t collect stamps” It’s not even rude, it’s just “yeah that thing doesn’t apply to me, sorry”
@DaveWeil Bad example. Here: I say "Would you like to come to our atheist meetings?" Person: "No thanks, I'm a Christian" Me: "Okay, cool"
@amadams121 @AutoimmuneList Note: DysAutonomia symptoms started 2006 also, but not noted/addressed for yrs, after numerous syncopal episodes, pulses in 20s. Had to get pacemaker in 2010 for syncope, low BPs/pulse. Didn't know exactly why (not dx'd w/DysA yet) but pulse was 19, so we had to do something.
@amadams121 @AutoimmuneList Delay from symptoms to Dx in #Sjogrens is one of the longest I've seen. Agree, dryness = "hallmark" symptom. First mention of dry eyes was LASIK in 2006, after 2 yrs probs wearing contacts. Sjs wasn't even on the radar until 2015, dx'd in 2017 after + labs. So, 13 yrs for me.
🧵🧵 Recently - Chart note: Reason for visit: To discuss Rx cost. REAL reason for visit: Foot pain, curving toes in setting of RA/Sjogrens. Here to discuss foot orthotics, PT, other tx options. 👉 DEAR PHYSICIANS: GET IT RIGHT. THIS ISN'T HARD. Thanks, Patients everywhere
You know it'll be an interesting day when your 1st patient with #LongCovid is currently in the hospital for #orthostatic hypotension, but is diagnosed with FND by neurology because of some tremor in her hand I really could care less about. 🧐 #DysautonomiaIsNotFND
@Jay63104510 @ThePOTSPostman There is no definitive sjogren’s test. You can have sjogren’s with a negative salivary gland biopsy for a whole bunch of reasons.
Just saw a new neurologist, if anyone is in the NY/Long Island area this guy is great. Spent about an hour with me. Asked me questions no other doctor asked, did exams that no other doctors have done. He is incredibly knowledgeable about dysautonomia. He has me doing blood…
Is There Anybody Out There? music.youtube.com/watch?v=CIxYe3… via @youtubemusic
I've got a lot of shit goin' down right now .. good & bad .. so I'll be In N Out .. 🤣
@Milordon82 @reason You can literally google it (Fla. Stat. § 960.293)
This story is bananas. Florida charges people $50 a day for their stay in prison. The state wants this woman to pay $127,000 because she was sentenced to 7 years—even though she only served 10 months. A perfect example of how the gov’t sets people up to fail upon release.
In Florida—and most other states—inmates are charged for the costs of their time in prison. The practice, called "pay-to-stay," leaves many former offenders with staggering debt. reason.com/2024/04/24/she…
Have you tried low dose IL2 for Sjogrens? I'd love to hear your experience if you have. I'll post some Sjogrens IL-2 paper links in next tweets in the event you haven't heard of it. (Pls RT if you are interested in learning if anyone has tried this treatment too. Thx!)
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