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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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620923 tn?1452919248
Hi all here is a link to several videos by a Dr that has EDS and shares info on this condition. I hope these help answer some questions: http://www.youtube.com/watch?NR=1&v=ZhpOZNVIdLs Dr. Diana as Patient explains the various f...
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Avatar universal
hey guys,i think i got type 1 eds.you see i workout at the gym and love dancing.was wondering if its ok for someone like me to carry out such activities?i haven't approached a dr. yet.dunno if i can afford one.(so cant say exactly if i d...
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15075305 tn?1438273576
Hi everyone! I have been recently diagnosed with EDS type III. The search for a diagnosis took more than 20 years, but finally I was able to find my rare disease : ) Thing is, besides the well-known problems linked to EDS, I have been ex...
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Avatar universal
I do not have EDS, I apologize right now for any ignorance.The mother of a very close friend of mine however has the hypermobility type as do both if his half brothers. My friend remains untested, it scares him to death, understandably. ...
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Avatar universal
Highly suspicious about having VEDS, is the "translucent skin", bruise easily and a clubbed foot at birth typically a hallmark of VEDS? Btw, i am only 37, i think i look 60. I just got insurance again and have a Rheumatology appt June 16...
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Avatar universal
Hi everyone, I was just wondering if I could have abit of help and advice please? :) I'm a 16 year old girl and I think I may have hypermobility type eds but I'm not 100% sure. I'm hypermobile with a beighton score of 7 and I have joint ...
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620923 tn?1452919248
Hi the Driscoll the theory has been proven...so it is no longer a theory.... See more links to this info in the Ehlers-Danlos group page here on Medhelp....this is the newest video released explaining all of it. I am so glad to k...
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620923 tn?1452919248
The link below is a talk with Dr Claire Francamano.....very interesting ~~~ http://www.youtube.com/watch?v=vesuF_8_KZs
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620923 tn?1452919248
Copy and paste this link and read the story,Tim Tebow surprises girls with EDS.... http://www.aol.com/article/2014/08/27/former-nfl-football-tim-tebow-gave-a-sick-virginian-teen-the-tri/20953308/?ncid=webmail16
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1903798 tn?1333908888
I thought this might help someone so I wanted to share. I have known that I needed silver ring splints for a long time but couldn't find where to order them and bill my insurance. My PCP Dr had said she would send the prescription for wh...
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Avatar universal
Does anyone with EDS have Ptygerium. Ptygerium is a horizontal line of tissue that runs across the eyeball. Let's say rt corner to cornea and left corner to cornea. It can cross into the cornea at some point which if so will require ...
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Avatar universal
You probably get this a lot. My physical therapist mentioned connective tissue disease so I looked it up and was very surprised that this has not been brought up by any of my doctors before. I am a 41 year female. I have chronic pain, ...
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7748835 tn?1393872268
Do I Have Ehlers Danlos Syndrome? MY symptoms include: my fingers have that swan neck look to, and they become very hyper extended whenever I straighten until it hurts. I can bend over and touch my palms to the floor without bending my k...
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8255382 tn?1397295871
ds1 (oldest) ds2 (youngest ) DS1 has EDS Hypermobility with Classic overtures, he also has Scheuermann's Disease & very mild Spina Bifida. DS2 has EDS Hyper mobility Type, with some Classic Type overtures as well. He also has Hered...
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1903798 tn?1333908888
I am farsighted and my eyes are very different. 2.5 prescription on right and .5 on the left. No matter what they do they can never make my right eye clear. It has always been the weaker eye (common with EDS). I had brain surgery in Fe...
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620923 tn?1452919248
Are u aware what cause John Ritter's death can be associated with having EDS or other connective tissue disorders? http://www.thedoctorstv.com/videolib/init/1548 http://www.tadcoalition.org/tad/4402/ Know ur condition and the r...
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5938418 tn?1377027189
I have a teen daughter diagnosed by pediatric ortho and doctoral physical therapist to have JHS. It's not the simple variety as she has reflux, hernia, constant joint dislocations, fracture, severe pain, multiple instances tendonitis in...
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Avatar universal
I was diagnosed with Ehlers Dan Los Syndrome  a bit over 2 years ago. It causes reacuring dislocations. Mostly in my right hip and knee. And constant strains of ligaments and tendons. Both of which obviously cause extreme pain. and makes...
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Avatar universal
So I guess I'll start with the fact that we have family history that I only found out about now after my child broke her 2nd bone in 5 years (just by smacking her shin) My daughter has had issues since she was an infant. She had...
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1544075 tn?1296030098
Hello. I am a 25 year old female with a large Chiari Malformation that was operated on in 2009. I recently was also diagnosed with Ehlers-Danlos syndrome. After my surgery, nothing got better but recently I have been having extremely lu...
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