hypermobile type EDS

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hypermobile type EDS
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    What’s been your experience with patient advocates?

    Navigating the health care system when you have a condition like EDS can be challenging and overwhelming sometimes, especially when met with others who aren’t as knowledgeable about what it’s like to live with your diagnosis.

    But sometimes, seeking assistance from patient advocates who are educated and willing to put in work to get you the help and treatment you need is invaluable.

    What have your experiences been like with patient advocates? Did you find one that was helpful to you?

    ✅ Want some insight from a personal experience? Check out what ChristieCox has to say in recent Mighty article here: themighty.com/topic/ehlers-danlos-syndrome/find-hypermobile-...

    #EhlersDanlosSyndrome #RareDisease #Hypermobility #EhlersDanlosSociety #ChronicIllnessEDS
    #HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
    #MentalHealth #Anxiety #Depression

    2 reactions 2 comments

    How to convince my parents that i cannot just "WALK OFF" an EDS-related injury?

    #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!

    10 reactions 4 comments
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    I’m new here

    My name is Mary and I’m a 35 year old single mom recovering from my 6th & 7th back to back surgeries. It took me until 32 after my 5th hip/spine surgery when I finally demanded a genetic specialist for myself in a brand new state. Please don’t give up and know that even if your condition isn’t always visibly obvious like mine you’re not alone ❤️! I had to leave behind the toxic people that kept me from pushing on and finding my truth. I’m grateful for the help finding others that can help me understand the symptoms of my life with hypermobile EDS. #InvisibleIllness #HypermobileTypeEDS #EhlersDanlosSyndrome

    6 reactions 3 comments
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    Comic Relief… look at the face you make when your invisible illness is dismissed? #EhlersDanlosSyndrome #InvisibleIllness #HypermobileTypeEDS

    You understand why I had to retire early from my home healthcare for seniors other than the obvious progressive debilitating condition right… that face was one of my better ones 😂!

    Does anyone else feel like they are the reverse Benjamin Button internally lol

    6 reactions 1 comment
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    Have you found any books, shows, or movies that portray EDS well?

    Unfortunately, depictions of EDS in the media are rare, and are not always accurate.

    We’ve heard from our community how frustrating it is to see media perpetuating harmful or misleading stereotypes ("you’re so bendy!"), or how isolating it can be to not feel represented at all.

    Have you found any accurate or validating portrayals of EDS (whether in books, shows, movies, etc.)? Share with us below.

    #EhlersDanlosSyndrome #RareDisease #Hypermobility
    #HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
    #MentalHealth #Anxiety #Depression

    15 reactions 8 comments

    my quick answers to strangers’ questions :)

    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

    24 reactions 11 comments

    After some advice please

    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

    2 reactions 13 comments

    Temporary Alternative to Silver Splints?

    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

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    Tortoise Thoughts

    Hello all.
    This is Meldrew, he's my tortoise.
    Sometimes he walks faster than most people can imagine, other times he walks slow, but he always gets to where he is going eventually.
    Some we can feel like the pace we are going is like that of a tortoise, but remember, as long as you get to where you are heading eventually it's all okay. Don't worry about the pace you are going. ❤️ Have a fantastic day everyone.
    #tortoise #pet #Ehlers -Danlos #EhlersDanlosSyndrome #Ehlers -danlos #hypermobileehlers-DanlosSyndrome(hEDS) #HypermobileTypeEDS #EDS #ChronicFatigue #ChronicPain #ChronicIllness #Spoonie #SpoonieProblems #spoonielife