Silver Ring Splints: stylish custom jewelry/medical appliance for people with Ehlers Danlos Syndrome

Ask-a-Zebra has Ehlers Danlos Syndrome (EDS), which makes her joints and muscles prone to painful dislocation. In a great post, she documents her experience with Silver Ring Splints, custom-made jewelry that stabilizes her hand and helps her write and type -- while looking absolutely awesome.

Having Ehlers Danlos Syndrome sometimes feels about the equivalent of being composed of jello and wet spaghetti. Nothing stays where its supposed to. Literally every single cell in the body is floppy, so fingers are definitely an issue for many of us. I can almost guarantee that for the majority of us, writing is not only slow and painful but nearly impossible at times. FIne motor skills? What even are those? An EDSer surely doesn’t have any of those. Even typing which is far easier than writing, is painful and daunting at times. But last year I joined the population of shiny zebras by getting fitted for a set of Silver Rings Splints and they are beyond magical.

For those of you who have not heard of The Silver Ring Splint Company, they are a company that custom makes finger splints that look like elegant pieces of jewelry. Don’t believe me? Well I can’t even tell you how many compliments I’ve received for them. Nobody even suspects that they might possibly be medical. But more importantly, they work amazing! I still have hand pain and finger dislocations when performing fine motor skills and writing is definitely not something I look forward to but I have saved myself thousands of painful dislocations, I can open doors easier, type faster, write longer and hold objects in my hands without looking like an alien from a sic-fi movie. With the rings on my fingers actually look like fingers rather than tentacles!

Silver Ring Splint (via Wil Wheaton )

Notable Replies

  1. There are some pools which use much less harsh bromine salts and UV for disinfection. Ever tried one of those? I think they're more common as private pools then public, but worth a try if you can find one.

  2. I hadn't realized there was a difference, so I hadn't looked for one. That gives me something to think about, and look into.

  3. no idea if it makes a difference but there are also ozone disinfected pools. In theory we have one locally but there were some issues with installation/efficacy and chlorine needs to be used in it.

    Also isn't skin one of the possible areas of presentation for collagen disorders?

  4. Yes, I avoid yoga for that very reason. I was an avid social and competitive dancer for years. Believe it or don't, you don't need anything more than your own body weight to achieve 'weight-bearing' exercise. The problem with using weights is that it puts too much pressure on joints that can't usually withstand it. And for aerobics, it's estimated that even running doesn't top Viennese waltz. You don't have to build a lot of muscle - just tone what you have. And that also gets meets the 'no impact exercise rule' as well. Because, even if you go up and come down? That's mostly illusion and you learn to do without any impact. Go sign up for some classes at whatever your local independent ballroom are - you might find anything from Salsa to Tango. See if you like it!

    I dumped PT because of the pool chemicals, too. And really, few in that game understand our mechanics. (I got more gains with a highly-qualified dance instructor, actually. They're kind of used to us. We need to stretch, and dance lets us do it!) I won't even use the pool here at home. Many, many of us are chemically sensitive and have all kinds of weird reactions to medications and such. But I live near the ocean, so I have a place to get in the water if I want to. Hopefully, you'll find a solution that suits you.

    Tribune - yes, skin is what you see. But collagen is everywhere in the body. It's more than just little joints and stretchy skin. There are also risks for aortic dilation, digestive and vision issues, etc. Even people within the same family who have Ehlers-Danlos can have different problems and different joints that misbehave. Some people have it very mildly, while others are completely debilitated. Some people have the problems with their fingers that the ring splits are intended to solve, others can't stand up without rolling right off their ankles. (Gotta figure - we all got half our genes from the other parent, in some pile-up that creates nearly random effects at times.) However, being rare, not a whole lot of research has actually been done.

    Some of us are conducting a genealogical/genetic research project over on (the Ehlers-Danlos National Foundation's forums). If you are interested in joining it, jump on in! We expect to be announcing it formally shortly. The challenge has been that markers for this inherited condition have not been located for all types yet. We have good reason to believe that this is the result of multiple mutations in the population causing the condition. So, we'll be looking to verify lineages using both autsomal dna and traditional genealogical documentation (something traditional researchers seldom, if ever, employ).

    Goal is to isolate those family groups and get rid of at least some of the variables that have most likely caused research to date to fail. We've found we have people amongst our own group with expertise in various life sciences and health informatics, so....doesn't get any more DIY or 'maker-ish' than this! Only with actual humans, not 'bots. Hopefully, one day, our kids and theirs can be diagnosed earlier and get better interventional treatments so that they can have better quality of life.

    Huge thanks for the article, Cory and ask-a-zebra! What a happy surprise, today!

  5. Yes, finding knowledgeable medical care is difficult for most of us. (I've literally had several physicians ask me how to spell it.) But, that same site has quite a lot of us 'bendies' from all over the place - including Canada, Australia, and various countries in Europe. It's usually a good resource when you need to find some good care in various specialties.

    I'm so sorry about the thing with the weights! Other problems forced me to stop dancing last year, so I know what you mean. Most of us build muscle so slowly and with so much effort that just the idea of letting go for too crazy-making. The guys usually seem to be at a certain advantage in this, since they have greater muscle mass to start with. For the girls, it's kind of a double-whammy...unless you're one of those lucky ones with all the gorgeous muscles. (I only wish I had them!) I broke ALL the rules when I was younger....and I'm paying for it now.

    But, do try a couple of dance classes - doesn't matter too much which kind, just go with whatever music you like best. One thing it'll do is slowly retrain your sense of proprioception. And, if you happen to pick one that requires you to learn to spin, you'll gain the tricks for overcoming dizziness, too. We're just...backwards from everyone else. They usually struggle with stretching far enough, while we struggle with holding it all down to something short of a Cirque du Soleil act, lol. And hey - if it's not your thing? There's always Zumba or barre classes, and such.

    Here's hoping you find your new fave activity soon! Because, seriously, with all the hassles this brings? I wouldn't want to let any of its (few) advantages go untapped!

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