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5 days ago
Photo by Aisling on July 20, 2026. May be an image of text that says 'SLIDES, 7 CLIMBS AND PLATEAUS: WHY I DON'T USE THE TERM "FLARE" @MY.CONNECTIVE.ISSUES'.
Photo by Aisling on July 20, 2026. May be a graphic of text that says 'I HAVE AUTOIMMUNE DISEASE RELATED TO BEING HLA-B27+ THIS IS A GENETIC MARKER STRONGLY ASSOCIATED WITH A GROUPING OF AUTOIMMUNE DISEASES. NOT EVERYONE THAT IS A-B27+ WILL HAVE THESE DISEASES, NOT EVERYONE WITH THESE DISEASES WILL BE HLA-B27+ IN MY CASE, MY SPECIALISTS SUSPECT A DIRECT LINK. SO MY CURRENT DX IS HLA- HLA-B27+ SPONDYLOARTHROPATHY AND RELATED AUTOIMMUNE DISORDERS. IT'S A MOUTHFUL.'.
Photo by Aisling on July 20, 2026. May be a Twitter screenshot of text that says 'SO WHAT EXACTLY DOES THAT MEAN? IHAVE BEEN DXED WITH CROHN'S, ULCERATIVE COLITIS, PLAQUE PSORIASIS, UVEITIS AND SACROILITIS. IT SOUNDS LIKE A LOT, AND IT IS- BUT HAVE BEEN ON IMMUNOSUPPRESSIVE MEDICATIONS THAT WORK FOR ME AND HAVE BEEN IN REMISSION FOR A FEW YEARS. THAT SAID, MY UNDERSTANDING OF A "FLARE" OF SYMPTOMS STEMMING FROM AUTOIMMUNE DISEASE VS DEALING WITH AN INJURY DIRECTLY RELATED TO HAVING FAULTY CONNECTIVE TISSUE IS VERY DIFFERENT'.
Photo by Aisling on July 20, 2026. May be an image of text that says 'SO WHAT'S YOUR DEAL? I'VE HAD AND UNSTABLE JOINTS MY ENTIRE LIFE. INSTABILITY AND WEAK CONNECTIVE TISSUE CAUSED DEGENERATIVE OSTEOARTHRITIS IN MANY JOINTS INCLUDING KNEES, HIPS, SPINE AND SHOULDERS. "FLARES" IMPLY SOME KIND OF RECOVERY OR REMISSION OF SYMPTOMS AND THAT'S NOT REALLY POSSIBLE WHEN COMES TO PERMANENT SOFT TISSUE DAMAGE OR OSTEOARTHRITIS. I DON'T FIND MY SYMPTOMS GET WORSE WITH ILLNESS OR WITH STRESS LIKE THEY MIGHT WITH AN AUTOIMMUNE DISEASE, IT'S JUST WITH AGE AND INJURY'.
Photo by Aisling on July 20, 2026. May be a graphic of poster and text that says 'SLIDES, CLIMBS, PLATEAUS I FIND THIS THE BEST WAY TO DESCRIBE MY COMPLICATIONS RELATED TO EDS. SLIDES ARE WHEN END UP WITH AN INJURY FROM AN ACCIDENT, CHRONIC TENDONOPATHY OR JUST CUMULATIVE DEGENERATIVE OSTEOARTHRITIS WORSENING FROM AGING. CLIMBS ARE MADE ALMOST EXCLUSIVELY THROUGH PHYSICAL AND BUILDING STRONGER STABILIZING MUSCLES AROUND THE PROBLEM AREA. PLATEAUS ARE WHEN THINGS ARE RELATIVELY STABLE.| CAN'T UNDO DEGENERATIVE CHANGES BUT AS LONG AS I KEEP UP WITH PHYSICAL' T CAN SLOW THE RATE OF SLIDES AND ENJOY THE PLATEAUS.'.
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Posted On: July 21st 2026, 05:45 am
I remember the first time I heard other people talking about their EDS “flaring” and I immediately knew I was in the wrong place 🚪
#ehlersdanlossyndrome #flare #disabilitypridemonth #eds #autoimmune

Being HLA-B27+ is not related to EDS, it’s just another health condition I happen to have.

None of these autoimmune diseases are EDS comorbidities, I just have them on top of having EDS. It’s extremely possible to have multiple health problems, even different genetic conditions.

Some people with hEDS find that their symptoms worsen with illness or stress. There is ongoing research about some forms of hEDS being a neuro inflammatory condition. This is not my experience, and not consistent with my phenotype.

IT’S THE CLIIIIIIIMMMBBBBB 🎶

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