@beesmartypants.bsky.social#disability #RareDiseases #autoinflammatory
Crowd Sourcing for leads to a diagnosis after yet, Another, trip to ED
I’m fluctuating between hyperthermia & hypothermia multiple times a day Temp range 93.6 -99F during “fever”, 96.6 normal body temp. Rheumatologist is like 🤷♀️
Neuro & PCP same
Help plz
@beesmartypants.bsky.socialAnybody else get the letter from Silver Scripts telling us we have to pay more for another drug supplemental insurance in 2027?
The timing couldn’t be more perfect. A punch to the face reminder
VOTING BLUE SAVES LIVES
@ifaiarthritis.bsky.social🌎 October 12 is World Arthritis Day!
Arthritis isn't one disease! Unlike osteoarthritis, AiArthritis diseases involve immune dysfunction and can affect the whole body—not just joints.
💬 What do you wish others understood?
#WorldArthritisDay #AiArthritis #Autoimmune #Autoinflammatory
@ifaiarthritis.bsky.social🧠 Mental health is part of the AiArthritis experience, too. Pain, fatigue, flares & uncertainty can take an emotional toll. This #WorldMentalHealthDay, let’s make space for the mental AND physical impact.
#AiArthritis #MentalHealth #Autoimmune #Autoinflammatory #Arthritis zurl.co/1nQtX
@ifaiarthritis.bsky.social📣 Advocate for Change.
Too many patients spend years being told their symptoms are something else. If that’s where you are, the pattern you’re experiencing is worth recording—and your voice is worth sharing.
💬 Share your experience.
@ifaiarthritis.bsky.socialSeptember is Pain Awareness Month.
AiArthritis pain can be more than joint pain—and its impact can reach every part of life.
💬 Which is harder to explain: your pain or its impact?
@ifaiarthritis.bsky.socialChronic pain is more than a number. Pain can be shaped by inflammation, fatigue, sleep, stress & more—and can persist even when disease is controlled.
@ifaiarthritis.bsky.social🇨🇦 September is Arthritis Awareness Month in Canada.
AiArthritis diseases can affect the whole body—not just the joints.
💬 What do you wish people understood about your symptoms?
@ifaiarthritis.bsky.socialHealth policy can be complicated. Understanding how it affects you shouldn’t have to be.
Explore the Knowledge = Empowerment web-based hub for patient-led policy education and ways to take action. No download needed.
@sigtrans-sttt.bsky.socialBenzofuran-based #MolecularGlues induce aberrant head-to-head STING oligomerization, disrupting canonical signaling and suppressing interferon and inflammatory responses, revealing a therapeutic strategy for STING-driven #Autoinflammatory diseases.
@ifaiarthritis.bsky.social🫁 Today is Interstitial Lung Disease (ILD) Day.
For people with some AiArthritis diseases, systemic inflammation can affect the lungs—not just the joints.
💬 Has lung health ever been discussed as part of your care?
#ILDDay #AiArthritis #Autoimmune #Autoinflammatory #Arthritis #LungHealth