Here are some of the best gadgets and tools the online zebra (Ehlers-Danlos Syndrome) community has found to help those with hypermobility and chronic pain.
Check back periodically for updates and additions as I glean more tips and tricks from the EDS support community.
I am primarily listing items that have been recommended by multiple patients. However, nothing works for every single body – you will want to find what works right for yours regardless of our recommendations. There is inevitably some trial and error involved for all.
You might want to get some guidance from a physical therapist or orthotist where appropriate. All of these items are available over the counter. You will need to consult with an orthotist (orthotics specialist) or physical therapist (physiotherapist in UK) for other items such as KAFO’s and AFO’s (braces for knees and ankles which require special fitting especially on growing children). Wheelchair notes are at the bottom, since there are so many to choose from. Good luck!
Bracing and Joint/Body Support
Embrace the Brace – great blog by an Ehlers-Danlos patient who has hacked some great solutions
Helps stick ribs back in place in front or back. Many styles and colors to choose from. Here are few to consider:
Electric JAR Opener
Yes, they exist, and help a LOT. There are several kinds to consider:
There are many to choose from online and at most drug stores. Here are a few:
Those with loose knee caps have sworn by the Cho-Pat Patellar Stabilizer:
Female Rib Brace
Male Chest Compression Vest
Silver Ring Splints
Silver Ring Splints (for holding knuckles in place. A hand orthotist can also fit you for cheaper plastic Oval 8’s as well). Some available on Amazon:
Smart Crutches (new style forearm crutches). SideStix another great ergonomic forearm crutch maker. Some forearm crutches on Amazon too.
Baja 637 Back Brace from Cropper Medical- can help with slumping and kyphosis. Back braces to help with slumping and kyphosis available on Amazon:
Security Grab Bars
Stander – floor to ceiling pole with curved handles to help you transfer yourself. Additional security grab bar poles available on Amazon
BiaCare leg assist – custom compression garments for those with lipedema “shelves” on their legs (and other places on the body). FarrowWraps and Circaids are another kind of compression garment. Others use standard compression bandaging to manage their lymphedema/lipedema. Speak to your doctor or therapist first to determine best choice of compression ware.
Quantum Heat Packs (another form of portable, re-usable heat pack) also available at Amazon:
Therapaqs – flexible re-usbable heating/cooling packs (can wrap around ankles, elbows) also available at Amazon:
Power Door Opener
Power door opener /assistance (look for other companies also, may require special installation, shop in your area for installers). Can purchase on Amazon but recommend professional installation:
Faraday Stylus – the handmade stylus with the fabric tip (helpful for those who can’t grip a pen or pencil)
Detachol – anti-bacterial skin adhesive remover for hospitals to avoid skin tearing when removing adhesives from IV tape, etc. One patient gave it a good review, saying it really helped on her fragile skin. (EDS skin tears very easily as many of you likely know already.) Available on Amazon for home use:
Obviously there are tons of different wheelchairs to choose from, new and used, so I’m just offering some tips here to help you get the best one for your body.
Since you will be spending significant time sitting in them, and we have such loose skellies (skeletons) and “shift” so easily, I highly recommend spending the money to be sure you get a good well-cushioned seat in whatever brand or style you buy. (Manual or power).
I strongly recommend avoiding the cheaper “sling” seat whenever possible in the folding manual chairs (like you find at hospitals), unless you have no other option. They can cause issues with your hips and pubic bones shifting and pinching.
I also found the solid foam padded seat of some cheaper power chairs to be too jarring to my fragile spine as I went over bumps in them. The better power chairs have both suspension systems (highly recommended) and better seats, as well as more easily maneuvered control sticks. Istrongly recommend the inflatable (and therefor adjustable) Roho seat for a power chair if possible. They are worth every penny, I promise.
Further, those with POTS (BP issues, need to recline a lot so as not to pass out) might want to look into power chairs that recline. (They exist!) I myself was blessed to score a mint condition used reclining Pride Quantum 600 series power chair with an inflatable Roho seat that I can’t recommend more highly.
Yes, they may be more expensive, but they can keep you from passing out. You might also invest in one of the relatively light, portable albeit static “anti-gravity chairs”, basically a reclining lawn chair for when you need to attend meetings and need to recline. (Great for conferences!)
And here is a great introduction to getting started with wheelchair use from Mobility Works. I hope this information helps guide you to the right chair for you, especially if you will be using one more than not for any length of time. It’s important that it fit your body and meet your medical needs as well as your finances.
Please send additional suggestions and reviews to firstname.lastname@example.org or share in the comments below or via the contact form above in the menu, thanks!