thtp://www.midlothianexchange.com/index.php/news/article/surviving-the-stigma-of-invisible-disabilities/19683/
Just a quick post to put the above link which I found via a link in a blog but I don't think I have to worry about referencing it as it is a newspaper article therefore publicly available. I am so rubbish at links so it may or may not work.
The references in the article may be to EDS Vascular Type as it says life threatening. Hypermobility Type EDS is painful but not thought to be life threatening as far as I am aware. The topic however is close to my heart, particularly the references to disabled parking permits. It seems though in the USA surgery is a more favoured option?
note: I have edited this post slightly as I wrote it in a hurry and felt it was a little brusque which was not my intention.
5 comments:
It looks like surgery is preferred for the US. I know that here, they will avoid operating if they possibly can.
Thanks for the link.
Interesting regarding surgery. Here in the UK no one will touch me with a barge bo poll. Multi directional instability in both shoulders - ortho's ran away from touching them. Require knee and ligament replacement and won't do that either. I am not sure though that I really 'believe' that surgery is a very viable option.
It took me quite a while to find a surgeon for my daughter, but once I found him it was yep, yep, come back next week and this is what we'll do. The surgical technique was not the usual for stabilizing a joint, but something had to be done. And so far it's holding. I don't expect it to be forever - but I'm hoping at least five years. I have released my daughter from almost all physical related duties in our house in the hopes of keeping her in as good a shape as possible for the longest time possible.
Hello Pop and Ice,
Thank you for your comment. I have been following your blog for a while now. I sincerly hope your daughter's surgery remains successful. With two bendies in our house - housework is not a very viable option. The technique the ortho wanted to use on my shoulders involved laser? heat to shorten stuff (I am so good at the technical stuff ha ha)and he felt that it could in fact cause more laxity due to the heat technique itself. I will be off now as I feel as I have explained all of that poorly. Nevertheless thank you for your comment on my blog. Up til now its only Veronica that kindly does so.
In regards to surgery on EDS patients, in Canada, they won't do it except for emergency surgery. Like if your appendix is about to burst, or if you've had a severely broken bone, and pieces are sticking out of you. I've asked, and they're not too keen on performing cesarian sections on people with EDS either, considering "many EDS patients have poor wound healing, and the skin has a tendancy to tear."
In regards to life-threatening complications, hypermobility type EDS does carry the risk of aortic dissection, which is often fatal. In Canada at least, people with hypermobility EDS are sent for ECG's and EKG's to check the heart and the aorta for signs that aortic dissection may occur. They justify the risk of aortic dissection due to the similarity of Hypermobility EDS to Marfan syndrome, and to the possibility of an improper diagnosis of EDS in someone that actually has Marfan.
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