Silver Ring Splints: stylish custom jewelry/medical appliance for people with Ehlers Danlos Syndrome
This is a cool article. I hadnât heard of cool ring splints. I have âsuspectedâ Ehlerâs Danlos. I learned about it here, and finally had something to ask the docâs to check to make sense of my injuries. I have the same swan necked deformity, and dislocate joints like whoa. The latest was my collar bones, which sucks! Itâs what convinced my doc to get me the genetic test for it, which I tested negative. However, I was told thereâs a 50% false negative on that. However, knowing about it means Iâm much more careful with myself, and have done better in the last couple of years. No new spectacular dislocations lately, which is a plus.
I was wondering, since there will be more folks with this condition reading here, what you guys do for exercise. I had to give up free weights after dislocating my collar bones. I fear yoga and stretching in case that makes things worse, and my PT gal said if I go with machine weight lifting I might be okay. Any one else work anything out that functions? I tried water aerobics, but the pool chemicals destroy my overly sensitive skin so bad, thatâs right out.
**edited for a typo.
There are some pools which use much less harsh bromine salts and UV for disinfection. Ever tried one of those? I think theyâre more common as private pools then public, but worth a try if you can find one.
I hadnât realized there was a difference, so I hadnât looked for one. That gives me something to think about, and look into.
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 isnât skin one of the possible areas of presentation for collagen disorders?
Skin can be a presentation issue in strethiness, but I hear my super sensitivity to everything topical might be related. I have skin that stretches like a cartoon. It was my childhood geek trick. I talked to one of the Jim Rose Circus guys about it back in the 90s, but Iâm not into piercings or suspensions to show it off. I didnât know what was going on back then. I just thought I was super bendy, and stretchy. Hell, even in nursing school, we all knew something was up with me, but nobody could figure it out.
For me itâs pretty mild. The dislocation thing is the worst of it, and it takes pressure to dislocate. Iâm trying to build some muscle to help hold everything in place. Iâm not sure itâs going to be very successful, but no PT person Iâve talked to has any really useful ideas. This level of hyper mobility is weird for them.
My collar bone dislocation came when I was trying out yoga intensely and doing a lot of free weights. The combo was terrible.
Yes, I avoid yoga for that very reason. I was an avid social and competitive dancer for years. Believe it or donât, you donât need anything more than your own body weight to achieve âweight-bearingâ exercise. The problem with using weights is that it puts too much pressure on joints that canât usually withstand it. And for aerobics, itâs estimated that even running doesnât top Viennese waltz. You donât have to build a lot of muscle - just tone what you have. And that also gets meets the âno impact exercise ruleâ as well. Because, even if you go up and come down? Thatâs 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. Theyâre kind of used to us. We need to stretch, and dance lets us do it!) I wonât 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, youâll find a solution that suits you.
Tribune - yes, skin is what you see. But collagen is everywhere in the body. Itâs 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 canât 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 inspire.com (the Ehlers-Danlos National Foundationâs 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, weâll 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. Weâve found we have people amongst our own group with expertise in various life sciences and health informatics, soâŚdoesnât get any more DIY or âmaker-ishâ 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!
Thanks so much for the info. I know of nobody in the medical community that even knew what to do with me. I found one PT person that was decent, and thatâs because sheâs had another Ehlerâs Danlos patient, and she had some great suggestions.
I really miss weight lifting, too. It was one of the forms of exercise I loved beyond all else.
Yes, finding knowledgeable medical care is difficult for most of us. (Iâve literally had several physicians ask me how to spell it.) But, that same site has quite a lot of us âbendiesâ from all over the place - including Canada, Australia, and various countries in Europe. Itâs usually a good resource when you need to find some good care in various specialties.
Iâm 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 longâŚis 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, itâs kind of a double-whammyâŚunless youâre one of those lucky ones with all the gorgeous muscles. (I only wish I had them!) I broke ALL the rules when I was youngerâŚand Iâm paying for it now.
But, do try a couple of dance classes - doesnât matter too much which kind, just go with whatever music you like best. One thing itâll do is slowly retrain your sense of proprioception. And, if you happen to pick one that requires you to learn to spin, youâll gain the tricks for overcoming dizziness, too. Weâre justâŚbackwards 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 itâs not your thing? Thereâs always Zumba or barre classes, and such.
Hereâs hoping you find your new fave activity soon! Because, seriously, with all the hassles this brings? I wouldnât want to let any of its (few) advantages go untapped!
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