I do not have ED's but have heard it talked about on other boards and last night on house, and know that some with chiari have this (i dont know what it is exactly) but was wondering if anyone else had seen that?....It was mentioned but hardly no detail about it was give....when i heard it i was like Oh really..
yeah i was really surprised on the shallow representation of chiari,- i know i heard several ppl complain about it.
lisa
Hi Everyone!
I have EDS (Ehlers-Danlos Syndrome). It is a connective tissue disorder, basically many people that are "doublejointed" have it. The cologen in your body is not produced correctly and causes you connective tissues to be very streachy and weak. Basically when "normal" peoples' joints and tissues are made from "super glue" my are made with "gum that has been sitting in the summer sun all day". That is really the best way toexplain it. LOL You bruse easy and have a hard time healing. Even with my DC surgery my head inscision was rejecting the staples, but wasn't healed well and split in some areas. I have to go to a specialist in MD in August to have all the proper testing done and to see how severe my case is. At The Chiari Instute I scored a 9 out of 9 on their test, so there is no doubt that I have a form of EDS, but which kind I am not sure yet. Just like Chiari there are different levels of severity. This not only effects your skin and joints, but you heart, lung and vein tissues as well. People with EDS can be more prone to anurisms (spelling?) and heart complications. So I hope this explains EDS a little better and would have liked to see the House episode. Good luck everyone. Wishing you all to be pain free and prayers!
Much Love,
Crystal
ya know i never really thought of HOUSE as a way to diagnose myself, but i guess people do...wouldnt be any different then our elders (and for some maybe our elder's,elder's-lol) watching marcus welby and thinking they have every new medical problem he tackled OR they have the cure because of his show.
I really hope no one is taking any medical show as a golden rule or self diagnosis..that would be scary.
thank you fro the explaination…iam told iam stiff LOL.
Crystal said:
Hi Everyone!
I have EDS (Ehlers-Danlos Syndrome). It is a connective tissue disorder, basically many people that are "doublejointed" have it. The cologen in your body is not produced correctly and causes you connective tissues to be very streachy and weak. Basically when "normal" peoples' joints and tissues are made from "super glue" my are made with "gum that has been sitting in the summer sun all day". That is really the best way toexplain it. LOL You bruse easy and have a hard time healing. Even with my DC surgery my head inscision was rejecting the staples, but wasn't healed well and split in some areas. I have to go to a specialist in MD in August to have all the proper testing done and to see how severe my case is. At The Chiari Instute I scored a 9 out of 9 on their test, so there is no doubt that I have a form of EDS, but which kind I am not sure yet. Just like Chiari there are different levels of severity. This not only effects your skin and joints, but you heart, lung and vein tissues as well. People with EDS can be more prone to anurisms (spelling?) and heart complications. So I hope this explains EDS a little better and would have liked to see the House episode. Good luck everyone. Wishing you all to be pain free and prayers!
Much Love,
Crystal
I don't know much about EDS. As much TV as I watch, I always miss the episodes on Chiari and other related stuff. Our speaker at the Chiari Syringomelia Foundation's Educational Seminar on the 20th of this month will be Dr. Joe Tregaskes who is an expert in treating cranio-facial pain (like TMJ) with a special interest in EDS. I'm looking forward to learning more about it.
Hugs
Shirley
Thank you Everyone for the positive feedback. I am glad I could be of some help. It makes me feel that I was given these diagnosises for a reason and like I said before I am just looking to make a positive of it and pay it forward in some way. Love you all my sweet Chiari Family.
Much Love and Blessings to you all,
Crystal
P.S. When I get to MD to see Dr. Frakenarmano (spelling?) I will let you know what she tells me and pass on what I learn. She is suppose to be the expert in the US of EDS and other genetic issues. Hoping for a good result with her and a brighter future.
A good result and a brighter future.....it can happen....I'm living proof of that!
Hug
Shirley