Discover and read the best of Twitter Threads about #sjögren

Most recents (6)

Abro hilo largo👇
Me gustaría compartir con vosotros mi último artículo de revisión. Desde hace mucho tiempo se sabe que el virus de Epstein-Barr (EBV) está detrás del desarrollo enfermedades autoinmunes, cáncer e incluso se sospecha que está detrás... (1)
...del desarrollo de Síndrome de Fatiga Crónica/Encefalomielitis Miálgica y del Long COVID. Pero todavía no está claro las vías que utiliza. En esta revisión describo como la posesión de ciertos alelos ancestrales de HLA-II... (2)
...(sistema que utiliza nuestro sistema inmune para reconocer que proteínas son extrañas ,como lo patógenos, y cuales no) hace que el individuo sea débil genéticamente para controlar las células con latencia de EBV, desarrollando así distintas enfermedades. (3)
Read 25 tweets
#Sjogren’s patients often have difficulty finding the care they need, especially when it comes to systemic manifestations. Many are told that they have the “glandular version”, despite undeniable evidence that Sjogren’s is a serious, systemic disease.
1/
There is no “glandular version” of Sjogren’s. You can find systemic features in almost every patient- if you look for them.
“The evaluation of the systemic manifestations of SS are not properly incorporated into clinical practice”.
2/
pubmed.ncbi.nlm.nih.gov/35650656/
When Sjogren’s is viewed as a nuisance sicca (dryness) disease, patients are not monitored for systemic manifestations. There are no guidelines for the routine monitoring of Sjogren’s. Until we have clear guidelines, suboptimal care will remain the norm.
3/
Read 16 tweets
"What’s more devastating is that the next three struggles the researchers identified—constructing an explanation for suffering, negotiating with the health care system, and proving legitimacy—are all toxic side effects of modern medicine" 1/
Sjogren's patients are often treated as if their symptoms could not be that bad; many physical symptoms are psychologized, especially autonomic and other neuropathies which are labeled as anxiety or FND. Patients often feel abandoned or gaslit. #dysautonomia
2/
My 2021 informal survey of 100 patients asked their biggest challenge living w #Sjogren's. The top answer was not symptoms, but the failure of doctors to treat it as a serious systemic disease. Patients often had to seek specialty referrals on their own. 3/
Read 8 tweets
My #Sjögren's patients often wonder about their lab results:

“What is SPEP & hypergammaglobulinemia?”

Let’s discuss…

1/14 (sorry, this one is a bit long!)
The other day I mentioned that low C4 complement levels are associated w/ lymphoma development & poor prognosis in Sjogren’s:

twitter.com/hashtag/Sj%C3%…

2/14
We also learned that having low C4 complement levels in someone being evaluated for possible #Sjögren's could be predictive for the diagnosis (“classification”, technically speaking) 2-3 years later even w/ a negative initial evaluation:

doi.org/10.1002/acr.23…

3/14
Read 15 tweets
@angelmartin_nc Hoy es el día mundial de las Enfermedades raras #diamundialenfermedadesraras.
Estas enfermedades afectan a más de 3 millones de personas en España y a los que cuidan de los que las sufren, ¿me ayudas a compartir 7 píldoras de información? Mini hilo🧵👇
Píldora de información 1:
✅Una #EnfermedadRara es aquella que afecta a menos de 5 cada 10 000 personas, es decir, que no es que sea rara porque te transformes en un gigante verde radiactivo, si no porque poca gente tiene la misma enfermedad que tú.
Píldora de información 2:
✅Se conocen más de 7000 enfermedades raras diferentes y el 80% son de origen genético, es decir, el bebé nace con ella y la padecerá toda la vida.
También las hay de otros orígenes, como #Sjögren, que es autoinmune (tu cuerpo te ataca a ti mismo)
Read 11 tweets
Now eye enjoyed an important question addressed at #EAN2020. Good to think about when you are called to ED for #opticneuritis. Let’s think about it together. Let’s focus on #clinicaldiagnosismaking #meded #medstudenttwitter #medtwitter #neurologyresident @WNGtweets @EANeurology
How do you tell if it’s optic neuritis or not? #painless #unilateral #altitudinal -means top half or bottom half of the field - vision loss more likely to be non-arteritic AION. Any other red flags less likely to be optic neuritis?
Now if it’s #painful it’s more likely #opticneuritis - but what sort? Bilateral vision loss and painful, think #MOG. Unilateral severe vision loss more than pain, think #Aquaporin4. MRI orbits show longitudinal extensive optic nerve enhancement in both. So MRI orbits for clues.
Read 8 tweets

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