Talk about EDS....
Nov. 8th, 2009
Hi guys. I need some advice/help. My orthopod is taking the "softly softly" approach to my knee, so rather than leap straight into a reconstruction, he's going to do an arthroscopic meniscal repair on it this Friday. He's said he won't know until he's in there whether he'll be able to stitch the gaping hole in it or if he'll just have to remove the damaged area, but either way I'm looking for advice or experiences regarding when it'll be safe to put weight on the joint again, especially if he stitches it given our problem with suturing. I've got hypermobility type, but my skin is pretty fragile with it, and with almost every skin lesion I've had removed, within 24 hours of having the stitches removed the wound's popped open again. I know internal stitches are different, but how long do I have to be paranoid about ripping them open? Any and all help appreciated, especially anecdata.
(x-posted to ehlers_danlos and ehlersdanlos)
Jun. 27th, 2009
05:04 pm - Australian/NZ EDS folks Website
LiveJournal is a great place and I don't mean to drag you away from it, but there's also another place now where Australians and Kiwis with EDS (Ehlers-Danlos Syndrome) are gathering to share information and support.
The web address is http://edsaus.ning.com/
If you've never used a Ning before it's a bit like Facebook - you'll need to sign up and log in before you can really see what's there. And what's there is no spam, lots of Australians (and NZers) with EDS and HMS and all the associated complications like NMH, POTS, CFS, Fibromyalgia, RSD/CRPS, and the rest.
There are EDS sufferers, parents of kids with EDS, and even I think some professionals who are interested in it. There's the beginnings of resource lists and sharing about which doctors/physios/osteopaths/etc. are informed!
I'm not involved in running it or anything, but I want to gather as many of us Aussie/NZ EDSers in the one spot so we can share resources. We're so spread out it's hard to network! So I've appointed myself evangelist and I'm spreading the news :)
Hope to see you there!
[cross-posted to ehlersdanlos]
Jan. 14th, 2009
08:51 pm - EDS primer
Just a heads-up, for y'all:
I recently posted on my journal an article about EDS and massage therapy here, over on my journal. It's mostly designed to be something you can print off and hand over to a new massage therapist who has no background on EDS but it does cover some of the benefits of massage therapy and bodywork in general for those who have EDS.
Cross-posting this to ehlersdanlos; hopefully some of y'all will find this helpful. :)
Jan. 8th, 2008
04:21 pm - Nationwide Registry/Study
It focuses on preventing aortic aneurysms for a few different genetic conditions. The EDNF is affiliated with this project, but I don't know much more than what's on the GenTAC site. Here's information on joining the registry, including contact info for the enrollment centers in New York, Maryland, Pennsylvania, Texas and Oregon.
Dec. 7th, 2007
Just so you know, this is all the fault of synecdochic because she was using a quote with the word "fracture" in it and it made my brain go "She's got EDS, it should be a "dislocate" quote!". So, here's a collection of quotes featuring the word "dislocate" (or variations of it). I only have ones where it doesn't mean dislocating a joint because, well, we have too much of that already.
If anybody else has other quotes, please add them in the comments - I love collecting quotes.
( Dislocation quotesCollapse )
Nov. 1st, 2007
Hi. My name's Mat.
I was diagnosed with some form of EDS several years ago but the only thing I ever got from the doctor that I went to and handed me down that diagnosis was one prescription for an antidepressant which I never filled (I'm kind of incredibly sensitive to a lot of medications, and had just come off of several years of trying to find the one antidepressant in the universe that wouldn't make me wish I was dead) and haven't managed to get to see any related doctor since.
But lately my hand issues have gotten so incredibly bad that I try to write during my classes and before they're about half over I almost literally can't hold my pen anymore, mostly due to the pain it causes me. I can see the exact problem with it, which is that the first joints on my fingers are so weak that they're all bending backwards at the amount of pressure I need to hold my pen and write, and all of my fingers except my pinky end up pressed hard to the side of my pen and pretty much wrapped around the shaft of same. I just can't work out what to do about it, really. And this is doubly bad because my professor for two of my classes this semester tends to require pages and pages of handwritten material every class. (And as for disability services at this school...let's not even start.) Not to mention the fifteen minute popquizzes that I only ever get half done due to the way my writing speed has ended up lately. I've tried larger pens, those little gummy holder things that they give you for your pencils when you're in kindergarten, more expensive pens and even trying to switch to writing offhanded for a while, and nothing seems to be helping.
So the main thing I was wondering is this. First off, has anyone had the same or similar problem, and second off does anyone know any exercises I could try to do to make this stronger, or any reasonably inexpensive things I could try to use at least as something to tide me over until the end of this semester (another month) or when I can fight to get in to see another doctor (knowing the way things tend to work for me, probably around 2014. Bleh.)
Thank you in advance.
Sep. 17th, 2007
11:08 am - We're famous!
Hey kiddies, we made it into the New England Journal of Medicine!
Sep. 11th, 2007
02:38 pm - EDS Alert Newsletter Is Moving!
The EDS Alert Newsletter is a weekly/bi-monthly newsletter that collects links to blogs, news and medical article about EDS. It is meant to fill in the white space by covering discussions about EDS that might be missed and to provide connections between individuals with EDS.
We have moved to a new location. To continue reading the EDS Alert newsletter go here: http://edsalert.greatestjournal.com/
If you are a member of Livejournal you can subscribe to the newsletter by adding it to your Friends List. This will allow you to continue reading the newsletter as you would normally do on your Livejournal Friends Page. The subscription page is here: http://syndicated.livejournal.com/edsale
(click on "Add this feed to your friends list ...")
Jul. 2nd, 2007
01:21 am - Story time
Thursday last I finally had my appointment at the Pain Clinic at the Big Hospital in Town. It was a less than edifying experience.
I'm going to x-post this a bit, so sorry if you get spammed. I linked to my journal because it's a bit of a treatise. Be warned. :)
May. 4th, 2007
This is an article in Dutch.
It's about that some gynaecologe in Holland is saying that loads of illness like an unstable plevis after giving birth (and HMS and stuff) is just made-up and only is real inside the brain..
I'm not good at translating (my mind works one way.. Or Dutch or English or German and no translations) but I'll ask my hubby to translate this weekend or to give a good summary (he's a teacher of the English Language).
(or maybe someone else can translate it, he's really busy with gratuating at the moment)
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