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Ehlers-Danlos Syndrome Group

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

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Avatar_universal
Ok I need some clarification...it seems from what I read online there ultimately isn't much difference between Hyper mobility syndrome and ehlers danlos part 3...any input on this??? My daughter def has hypermobiity...is this the sam...
seamatty | Last answer
Avatar_universal
So my skin is quite stretchy. Most noticeable on my face/neck. I don't bruise easily, I don't have any joint pain, I don't cut easily. So what could the stretchy skin be? EDS? Do I need to worry? I fear my doctor would think I was weird ...
jonnykino | Last answer
Avatar_universal
Selma showed me the link to this page from the Chiari forum. I'm not a hundred percent sure I have eds. I do know that I am double jointed and chiari and eds are commonly together. I am looking for actual tests for it. The chiari doctor ...
nsalem656 | Last answer
Avatar_universal
I am a mid 30's mother of a 6 year old boy and after a very long life of ignorant doctors and hospitals, I have been diagnosed with Ehlers-Danlos Marfanoid Syndrom. I have been looking it up. Umm... I am not sure what to feel validated...
michelle669 | Last answer
1427565_tn?1327433809
Hi after never hearing of my HMS condition, i decided to research and see if there was a book that could inform me more and in simple terms! SO heres the link to amazon, its brilliat and has really helped me come to terms with my conditi...
jane_pain | Last answer
1427565_tn?1327433809
Hi there, Just before Christmas i was diagnosed with hypermobility syndrome, and after 13 years of looking for answers i finally have a label!! Anyway i'm just abit confused what the difference is between HMS and EDS??? My main pain i...
jane_pain | Last answer
1427565_tn?1327433809
Hi there, I have HMS and have been newly diagnosed, now i know what i have i am trying to help myself as much as possible (which after buying my first home which is very old, i am decorating and pushing myself more than i should be!) ...
jane_pain | Last answer
Avatar_universal
I am 15 and my mom refuses to belive there is something wrong with me, but my doctor says i may have Ehlers Danlos although my skin is not that stretchy and i do not bleed or bruis easily at all.. The main problem is the joint problems a...
pain101679 | Last answer
1823499_tn?1370093889
Was wondering if some of ya'll could give me some info. How were you diagnosed and what are different symptoms? Im just tryin to learn if I myself should be tested. Just looking for more info from everyone. Like how did the dr finally dx...
Sexybare | Last answer
1903798_tn?1333908888
I meet with my EDS Dr tomorrow:)
Rylanesmom | Last answer
1427565_tn?1327433809
Hi there, I have been newly dignosed with HMS after 13 years! I am 25 and i am thinking about starting a family in the near future but i am sooo scared about what this will mean for somebody that suffers alot of pain daily! It will me...
jane_pain | Last answer
1168938_tn?1327157832
Just wanted to wish you all the best for 2012. Suz
suzsibs | Last answer
620923_tn?1452919248
http://www.medhelp.org/health_pages/Neurological-Disorders/-What-is-Ehlers-Danlos-Syndrome-EDS/show/730?cid=186 Please post here anything u feel we can add to help this be more informative : )
selmaS | Last answer
1903798_tn?1333908888
Selma is there a list of Drs for EDS?
Rylanesmom | Last answer
620923_tn?1452919248
Hi All... what type of joint pains do u have... .how long does it last... does it flare?
selmaS | Last answer
1168938_tn?1327157832
I've just found out I have joint hypermobility. What tests should I have to find out which type I have? So far I've done Beighton's scoring system at pain clinic and scored 9. Can anyone recommend pain meds? I am taking pregabalin at the...
suzsibs | Last answer
1168938_tn?1327157832
I was at the rheumatologist yesterday and I wasn't referred to a specialist for tests, the hospital I was at used to have a clinic for EDS but the Professor has now retired, but his team of physio's still work there so I've been referred...
suzsibs | Last answer
Avatar_universal
I had a few questions about swelling. I have no been diagnosed by a dr for EDS but my mother was and well I am 100% sure i have it i just dont know what type. Anyway when I get hurt usually i swell and bruise easily sometimes it takes we...
trisha84 | Last answer
Avatar_universal
I have been sick since September 10th. It started off with a sinus flu type sickness which eventually turned respiratory. About 3 weeks after symptoms began, I finally went to the doctor and was treated with a Z-pack for pneumonia. I ...
liveformygirls | Last answer
Avatar_universal
The other day I was sitting watching cirque de sol with my friends and they were all fascinated by the contortionists and how cool the things they could do were. I laughed because all of the "weird" things they could do were completely n...
blondeballerina07 | Last answer
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