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Ehlers-Danlos Syndrome User Group
EDS
About This 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.

Founded by somemonkey on September 22, 2009
158 members
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EDS

Hi, i am 22 years old and have recently been diagnosed with EDS. i have always had aches and pains, stomach aches, and head aches. i am in some sort of pain everyday and it is difficult to do the things i need to do. i also belive i think differently than most people. sometimes i worry that i may have a mental illness- but i dont really fall under any of the categories. i was wondering if a mild form of autism is conected to EDS or other neurological disorders? i dropped out of college because i was too nervous to go to class, i would have all my homework done, have good grades, but some days i would sit in the parking lot too scared to go inside. i have always been a shy person, and thought i would grow out of it, but it seems to be more than just pure shyness.
10 Comments
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620923_tn?1416285879

  Hi and welcome to the EDS forum.

I noticed u also joined the Chiari forum as well, do u have Chiari? If so, that may be ur answer...chiari can cause anxiety....

I can tell u this, I no longer get that anxiety since I had surgery.....but not all dx'd  actually need to have the PFD surgery....EDS can cause cerviocranial instability which can also cause some of the symptoms and issues similar to chiari, including the anxiety,....so, it could be u need a fusion or some other form of treatment to help u.

Have u been to a Chiari specialist?
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4481194_tn?1355338138
thank you! i have been seeing my mom's NS who diagnosed me with EDS. my mom has Chiari and has had the fusion, i dont know much about it yet, my next apointment is a few months away. he doesnt believe i have chiari but i have only seen him twice
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620923_tn?1416285879

  U r welcome...

How is ur mom doing post op? Did she have the decompression too?

  Keep me posted on what u find out after ur next appointment.

Have a Merry Christmas <3
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1903798_tn?1333908888
Welcome Bella:) Cute Kitten picture!

This is from ednf site

Ehlers-Danlos Syndrome (EDS) is a group of related genetic disorders of connective tissue presenting with joint hypermobility, skin extensibility, and tissue fragility. Although the pathophysiology of EDS is increasingly understood, the psychosocial effects of having EDS have not been examined. We psychologically tested and interviewed 41 adults and 7 children with EDS. Anxiety, depression, anger, and interpersonal concerns were significantly elevated varying from one-quarter to one third of patients; over 70% had a history of some mental health care use Psychological difficulties appear to result from chronic pain and disability, ostracism or avoidance of relationships and social activities, sexual difficulties and reproductive concerns, and frustration with the medical system. Specific types of EDS (e.g., EDS Type I) are associated with greater pain and psychological distress. Psychological intervention, prescribed with the recognition that psychiatric features are secondary to EDS, is recommended for some patients.
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620923_tn?1416285879

  I honestly feel nething that causes chronic pain is going to also cause  anxiety....and depression...

Thanks for posting this : )
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4481194_tn?1355338138
thank you for posting this!
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4481194_tn?1355338138
and my mom has been through alot of abuse... she has had the decompression but it didnt help her too much. her symptoms were really sevear and she had years of abuse mental and physical ontop of everything. she is doing okay- but finding it hard sometimes to deal with the stress of her pain, let alone the stress of everyday life.
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620923_tn?1416285879

  I am so sorry ur DM has had to deal with abuse on top of  this condition....that is quite a bit to deal with.....

Was her surgery a success then, is the pain from something other then Chiari?....I do not mean to pry, but I wonder if she might have something else going on that she may benefit from the site as well as u.

Let her know about the site she may find some comfort and support here : )
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4481194_tn?1355338138
i will let her know. i am not really sure about what all she has. i know some of her pain has let up, but i dont think she will ever be able to have a job again.
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620923_tn?1416285879

  Many of the issues like Chiari the pain does cycle so she may be in a down cycle...she needs to know what triggers to avoid setting off a flare....even with EDS there r triggers...for me the cold weather is one....

I am in the same situation as ur mom...not sure I will have a job, not sure at my age I could get someone to hire me when u tell them y  u left the last one....so, time will tell.
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