Genetics Community
Ehlers Danlos
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This patient support community is for discussions relating to a person’s predisposition to a variety of medical conditions such as Alzheimer’s, blood-clotting disorders, breast cancer, cystic fibrosis, diabetes, Marfan syndrome, and Ehlers-Danlos Syndrome.

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Ehlers Danlos

does anyone who uses this have ehlers danlos syndrome?
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Avatar_f_tn
yes, I do. i just signed up on here. was looking for info about amniotic fliud, havin trouble with my preganancy. saw a post from a lady who has E.D.S. and tried to send a messege, couldn`t without signing up. How r ya? It`s kinda rare to find someone with this condition.
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Avatar_f_tn
yes, I do. i just signed up on here. was looking for info about amniotic fliud, havin trouble with my preganancy. saw a post from a lady who has E.D.S. and tried to send a messege, couldn`t without signing up. How r ya? It`s kinda rare to find someone with this condition.
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Avatar_f_tn
I do.  A few years back, I had ankle surgery and was diagosed then.  Then, this year, my back was hurting bad again and started to see a chiropractor who stated I had this - the hypermobility EI DS.  I was happy to have a second diagnosis plus it was explaining my back issue.  Very recently, I was reading up on it and found that club foot and easy bruising and heredity is an issue with EDS.  Well, I was born with club foot - one foot only.  I was always clumbsy as a child according to my parents and bruised easy then and still do.  My father had weak ankles and the military wouldn't take him.  He taught me how to bend my legs behind my head like he did to entertain family as I was "double jointed" like he was.  Side show type of comedy and yes, it has come in handy.  But, now, at 48 years old, the pains are coming in.  Lumbar back pain; hip pain; joint pain; easy bruising.  (I also had trigger finger a couple years back and had to get a cortisone shot.)  I've lived with this my entire life, am RELIEVED to know it's due to SOMETHING and not just me whining.  The chiropractor didn't help.  I just take Aleve and deal with it.  There ARE some days I'd like to just curl up and cry when it comes to low back and hip pain and I'm climbing stairs.  It hurts so bad.  My upper spine is also not perfectly straight.  Just a touch crooked.  My spine at my neck is straight and not curved as it should be.  My daughter has signs of this as well.  I've broken several bones in the last few years from falls prior to my ankle surgery.  I've just been dealing with this as I'm not sure there's anything you can do about it to permanently stop being in some form of pain.,
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Avatar_f_tn
Coming in handy meaning able to bend to get stuff out of a normal reach or turn, etc.  
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3201229_tn?1345366195
I have it. Super elastic and velvet like skin easily torn/bruised, hyper mobility, etc. Being male it has always been a bit difficult for others to understand why I was always excused from physical activities in school. It led me to be somewhat ostracized until I found myself later in life. Now in my Mid-Twenties I have found that this only effects my physical being and never how I feel or choose to live.
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