Imagine a world where the faulty, floppy, painful EDS body could be magically transformed by a fashionable, sturdy, and supportive body suit. I’m talking about braces that actually properly during both motion and rest . Braces that work with, not against, our natural body mechanics. The idea is to build an exoskeleton so cool and comfortable that everyone with or without EDS will ultimately want one! These are just several of the goals behind The Custom EXO Project. The project is currently being run through the ExoHuman Laboratory.
The Custom EXO Project could ultimately solve the majority of disabling musculoskeletal issues in EDS. The concepts behind this project were vaguely swarming around in my mind for years. I was about to get started by collecting some initial data, and then I met Adriane D Clipperton, creator, founder, and organizer of this project. It turns out she’s already gathered an entire team/ network of engineers, medical professionals and enthusiastic students planning to participate in the project. A Custom EXO Conference was held in 2016. Adriane has been scouring the internet and compiling information about all the latest options in custom bracing technologies, innovation, and even fashion! Her fantastical pinboards of beautiful braces bring EDSers hope for a better future.
Unfortunately, over the last year Adriane’s been battling severe health and financial issues caused by EDS. Right now, the best thing you can do to support the project is to help Adriane get the proper medical care she needs so that she can will be able to function. Please consider donating to or sharing her Patron page. Here you will find all the necessary links to everything Adriane! You can also learn more about her broad ability to create and/or support her by investing in her visual art.
The amount of time, energy, and thought she’s put into The Custom EXO Project is truly incredible. If we could work together to get this project some significant financial backing, it could save lives, figuratively and literally. Here’s an excerpt from the project Facebook group describing the motivation and inspiration behind the project .
“This exoskeleton (affectionately, ‘exo-armour”) could help address a range of mobility and functional issues. Current designs for brace and splints do not take into account persons who must wear multiples of these accessories at once: I’d like to integrate them for just that reason. Current models of compressors/braces/splints for joint problems are aesthetically displeasing, clunky (inefficient materials use), do not “breathe” (therefore sweat & skin irritation), cause bruising/skin-tearing from inefficient designs with rigid embedded materials and unnecessary seaming of the products (simply bad design), tend to “slip” (not custom-fit), cannot be worn with some activities (high temperature, in water, for long period, while sleeping, during high-intensity sports). For those with Ehler’s-Danlos Syndrome, an inherited connective tissue disorder, while purchasing a full-body set of braces none of these issues are addressed. In the online EDS communities there is always inquiries regarding the ‘best’ braces, and tips & tricks for adjusting current models to better suit a life-long need. Physiotherapy is always the first-line option to build muscle tone to help hold lax-ligamented and subluxing joints in place, but does not address the increased hyper-flexion and extension range of motion of a hyper-mobile body with prioperception problems. A body without the correct ‘movement-guidelines’ will hyper-extend/flex, dislocate, and cause extensive and culminating damage to the surrounding tissues and continual degradation to the bones involved (leading for many to early onset arthritis in their teens and twenties).
3D printing, in combination with precise 3D scanning, custom molding, innovative re-design of existing models and integration into the desired user-friendly end product(s) will respond to an existing need in the hypermobile-EDS and otherwise joint-affected communities (arthritis ect.) for a product that addresses these problems simultaneously.
By engineering more efficient design (open-frame, less surface area and less skin contact), better functional design (compressible mesostructures that provide rigidity instead of inset rigid structures) and working in newly-made materials and manufacturing processes (3D-printed for a custom fit of a 3D scanned body, flexible breathable materials with less bulk and better wear-and-tear than fabrics, hypoallergenic & recyclable for future re-fittings) I think we can make a brace system that is beautiful, and provides more accessible standards of design that people can be proud to wear, rather than irritated by.”
Let’s work together to make this project a reality!