“Between how much time I spend looking at screens & my #SjogrensSyndrome, my #eyes get fatigued really easily. That’s why I like to spend time away from gadgets & it’s a great way to make the day easier on your body.”: buff.ly/ua9GYSZ
by @katethealmostgreat.com
#ChronicPain #work #disability
I am at Chez Cookie and wanted you to know.
"Home again, jiggity jig. Upping my fast acting insulin to account for BG increase from meds. Fun times. #EDS #EhlersDanlos #SjogrensSyndrome #Type1Diabetes
Check out the details or leave a comment at: app.foursquare.com/share/checki...
I am at Chez Cookie and wanted you to know.
"Home again, jiggity jig! Don’t have to go back to the eye specialist for another 2 years as eyes have stabilized! #SjogrensSyndrome
Check out the details or leave a comment at: app.foursquare.com/share/checki...
I am at Wolfe Eye Clinic and wanted you to know.
"Yearly eye autoimmune disease checkup. #SjogrensSyndrome
Check out the details or leave a comment at: app.foursquare.com/share/checki...
Today is one of those days where I wish they’d put coke back in coke. Making my dental appointment for 4 more teeth to be pulled. Because who needs teeth? #SjogrensSyndrome #ChronicIllness #RareDisease #ChronicDisease
"In summary, #SLE-associated #autoantibodies are present in patients with other immunological diseases, especially [ #SjogrensSyndrome ] patients, and have a major impact on diagnostic efficiency.": buff.ly/1HtFAz4
#SjogrensDisease #lupus #MedSky
via @nature.com
FLaB promo for this gig. Text reads: Since 2013, Rare Patient Voice has awarded patients and caregivers over $15,000,000! Rare Patient Voice is looking for patients for a PAID opportunity to share their experience WHO Male patients diagnosed with Sjögren's Syndrome WHAT 60-minute in-person interview COMPENSATION $120 Visit rarepatientvoice.com/Buttahfly for details. Float Like a Buttahlly
RPV needs YOU!
@rarepatientvoice.bsky.social is looking for patients for a paid opportunity:
🗣 Male patients with #SjogrensSyndrome
⌚ 60-minute in-person interview
💵 $120 compensation
Visit rarepatientvoice.com/Buttahfly to sign up!
~🦋
#ChronicIllness #Sjogrens #SjogrensDisease #SpoonieSky
Raising awareness one confused immune system at a time.
Join our support group 👉 www.facebook.com/share/g/1Abd...
#autoimmunedisease #chronicillnessawareness #immunesystem #rheumatoidarthritis #lupus #ehlerdanlossyndrome #sjogrenssyndrome #ulcerativecolitis
Cold sores are the worst and I get them regularly. What is your go to treatment for cold sores when you flare?
#rheumatoidarthritis #sjogrenssyndrome #lupus #multiplesclerosis #fibromyalgia #hs1 #chronicillnesswarrior
I have #SjogrensSyndrome which affects the moisture producing cells of my eyes & teeth. I need prescription fluoride toothpaste & fluoride coating on my teeth or I get horrible damage to my teeth & gums - $10,000 visits kind of damage. Stupid RFK Jr is making the FDA end my prescription fluorides! 🤬
Health Disasters
#cancer #lupus #leukemia #mgus #sjogrenssyndrome #leucopenia #physicalhealtj #mentalhealth #hypoglycemia
youtube.com/shorts/o6r1t...
ngl a little bummed no one has made a #sjogrenssyndrome feed yet. One of the only things I still use facebook for is the support group I'm in. Though... that one's full of a lot of antivax dumbasses so... mixed bag. I would just love to have a community for it here, too. bsky's vibe is way better.
“The Lumoral method combines a #photosensitive #mouthrinse with dual-light activation to effectively reduce harmful oral #bacteria..Additionally, photobiomodulation therapy (PBMT) has been shown to stimulate #SalivaryGlands.": buff.ly/AOMM1bl
#SjogrensSyndrome #OralHealth
New #Feed: #Sjogrens #Sjogren's #Sjögren's #SjD #SjS #pSS #SjogrensDisease #SjogrensSyndrome #SjogrensFoundation
Exploring the latest research on #Sjogrens and emerging treatments, patient experiences, advocacy updates, and insights to improve understanding and care.
bsky.app/profile/did:...
A new mouse model of #SjogrensSyndrome which develops inflammatory cell infiltrate in #salivaryglands and #lacrimalglands - incredible!
www.science.org/doi/10.1126/...
I have Severe Sjogrens For 35 years. #Alopecia totalis for over 25 years. I have survived despite also having #PsoriaticArthritis,#Psoriasis and #SjogrensSyndrome too. The last 20 years I have been hunted by #ChronicInfections due to having to take #immuneSuppressants.
3 of the hardest things for people to say: I was wrong I need help And Sjogrens
Funny Sjogren's
#sjogrens #sjogrenssyndrome #chronicillnessmemes
Head like a dried prune because the heating's on. Joints less painful because the heating's on. It's a balancing act isn't it, fellow sufferers. An art form. #dysautonomia #sjogrenssyndrome
#POTS
Tufts University Study Need 7 more volunteers to complete their research! This is a non-invasive, non-interventional, study to identify the different substances (i.e. biomarkers) that can be isolated from the fluid, including the sweat, in the top layers of the skin of the palm of your hands. These substances in your skin may someday serve as new markers that can inform clinicians about Sjogren’s Syndrome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The study is looking for volunteers who are between the ages of 30 and 70. Participants can have Sjogren’s Syndrome, ME/CFS, or be otherwise healthy. Study involvement includes providing a sweat and saliva sample in person and mailing a sweat sample to Tufts. Participants who complete all study procedures can receive up to $75 in gift cards. For the in-person visit, qualifying parking can be covered. For more information, contact: Dr. Addy Alt-Holland (617) 636-3931
(MA, USA)
From the Massachusetts ME/CFS & FM Association
massmecfs.org/newsletters/...
Research subjects sought with Sjogren’s Syndrome, ME/CFS, or be otherwise healthy.
#MEcfs #CFS #PwME #Sjogrens #SjogrensSyndrome
Tufts University Study This is a non-invasive, non-interventional, study to identify the different substances (i.e., biomarkers) that can be isolated from the fluid, including the sweat, in the top layers of the skin of the palm of your hands. These substances in your skin may someday serve as new markers that can inform clinicians about Sjogren’s Syndrome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The study is looking for volunteers who are between the ages of 30 and 70. Participants can have Sjogren’s Syndrome, ME/CFS, or be otherwise healthy. Study involvement includes providing a sweat and saliva sample in person and mailing a sweat sample to Tufts. Participants who complete all study procedures can receive up to $75 in gift cards. For the in-person visit, qualifying parking can be covered. For more information, contact: Dr. Addy Alt-Holland (617) 636-3931
#Massachusetts
From the MassME newsletter
ME/CFS & Sjogren’s Syndrome Research Study at Tufts University Study.
Healthy controls also sought.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SS #Sjögrens #Sjogrens #SjogrensDisease #SjögrensSyndrome #SjogrensSyndrome
#dryeyedisease #autoimmunedisease #sjogrens #silentdisease #mentalhealth #depression #dryeyes #sjogrenssyndrome
lonelyeyes4.wordpress.com/2024/07/30/s...
#dryeyes #dryeyedisease #sjogrens #autoimmune #silentdisease #blogger #mentalhealth #depression #sjogrenssyndrome #autoimmunedisease
lonelyeyes4.wordpress.com/2024/07/28/t...
#sjogrens #dryeyes #dryeyedisease #autoimmune #chronicillness #silentdisease #mentalhealth #depression #sjogrenssyndrome
Right cheek was flaring today... I walked to a 5th grade classroom, and girl in the hallway working on a bulletin board quietly said to me “you’re so pretty” and I was so taken aback all I could do was quietly say “thank you” as I approached the door. Really turned my day around. #sjogrenssyndrome
