Splinting & Bracing for Management of Hypermobility Syndrome / Hypermobile Ehlers Danlos Syndrome

As a continuation of Rare Disease Month and my hope to spotlight Ehler-Danlos Syndrome and how it effects individuals so profoundly. This is a wonderfully illustrative post on how EDS’ers lives are full of protective gear to keep our joints from subluxing and dislocating all the time. I cried with hope when I read this post. Maybe if I get the diagnosis settled with a genetic test once and for all, maybe then I can get some of this much needed equipment and start to have a totally different quality of life in which I can participate much more actively in physical therapy, something I badly, badly want to be able to pursue without further injury like the last four places I went. This woman’s post gave me so much hope for the future. I cannot thank her enough for all the great ideas to return to once I can see the genetic counselor.

JBOT

Ok So another EDS related post but a topic that has generate a lot of interest and debate in the past and will probably continue to do so!

I am one of those EDSers who has a brace for almost every body part! (I’m missing a few) The 1st question that most bendie’s will have is how on earth did I get them all off the NHS? and the 1st questions for most medical professionals will be how on earth do I have any muscle tone left?!

My personal approach to splinting is not to replace the muscle/ligament/tendon part of the joint or to detract from its functioning but to stop my joints from getting into un-natural positions and to stop myself from doing any more damage to my already wonky body.. I ONLY wear splints when there is a RISK to my joints, I don’t splint my knees and ankles if I know…

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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

One response to “Splinting & Bracing for Management of Hypermobility Syndrome / Hypermobile Ehlers Danlos Syndrome”

  1. PurlBeadsJo says :

    Thank you so much for sharing my post!! 😀 I’m glad you like it and I hope you get all the help you need!

    Like

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