hypermobile type EDS

#EhlersDanlosSyndrome , #VEDS #HypermobileTypeEDS #Subluxations

I could honestly do with some advice, here; I have a pair of "caregivers" (my parents, incidentally) who seem convinced that I can just "walk off" my EDS-related subluxations, even when I complain I'm in so much pain as I attempt to walk the length of our 900sqft house in order to talk to them about it... :(

So does anyone have any tips, or expert websites for me to send to them? I would be eternally grateful to anyone who could help me make them take my injuries with hEDS as seriously as they do with my vEDS—which they had made me quit my job over after COVID hit state-side, mind you! (They were terrified of bringing it home to me, especially after the experts discovered that it was a vascular disease, as well as a respiratory one!

Any guidance would be much appreciated. Thanks so much in advance!

Hi. Here's my deal:
#ThoracicOutletSyndrome #HypermobileTypeEDS #PosturalOrthostaticTachycardiaSyndrome #CervicalSpondylosis #Scoliosis #Tendonitis #EustachianTubeDysfunction #Asthma #Allergies #ChronicMigraines #Narcolepsy #ARFID #ObsessiveCompulsiveDisorder #ADHD #Autism #Anxiety #PersistentDepressiveDisorder

just wanted to share that I FINALLY figured out a short, not too personal way of answering questions from strangers. I wear a c-collar nearly 24/7, and sometimes use a mobility aid, so I get a lot of strangers asking me “what happened?”. Ive learned that the easiest way for me to answer that is to just say “oh, just faulty genetics.” I sort of laugh it off, and smile (I also use humor as a coping mechanism, but this just works so well… lol!). They aren’t entitled to any answer at all really, but I find this is often enough to end the conversation in a friendly way. Sometimes though (if I’m feeling up to it), it provides space to teach someone new about EDS, which can be really neat!

#EhlersDanlosSyndrome #HEDS #HypermobileTypeEDS #CCI #AAI #Mobilityaid #MightyTogether #StayStrong

For quite a while now I've been having dizziness with almost like a seizure at the same time. I'm totally aware of what's happening when it happens but my body and limbs shake quite violently. Doc sent me for a brain MRI and all seems normal. Has anyone else experienced this? Any ideas on what it could be?
#EhlersDanlosSyndromeAwarenessMonth #EhlersDanlosSyndrome #HypermobileTypeEDS

Hey lovely people! Quick question about finger ring splints. I have several splints from the Silver Splint Company and I’m looking to order some more. However, I would like to try out the type of splint to make sure it actually addresses the pain before I invest in a silver splint. So I was wondering whether anyone knows of a company that makes similar splints to the Silver Splint Company/custom splints but in plastic or another (less expensive) material? Due to my location, an Australian-based company would be ideal, but if not, any company that currently ships internationally! Thank you so much! Apologies if this post is a little rambling - my brain fog is on point today haha.
Sending you all light and love!

#EhlersDanlosSyndrome #EhlersDanlosSociety #JointHypermobilitySpectrumDisorder #hypermobilityspectrumdisorder #HypermobileTypeEDS #ChronicIllness