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  #1  
Old 03-07-2014, 02:01 PM
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Any other Ehlers Danlos Disorder sufferers amongst us?

I found out about a year ago I suffer from this genetic disorder and it's really starting to wear me down. I was wondering if anyone else on here has it?

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  #2  
Old 03-07-2014, 02:49 PM
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  #3  
Old 03-07-2014, 02:51 PM
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Quote:
Originally Posted by JiveTurkey View Post
I found out about a year ago I suffer from this genetic disorder and it's really starting to wear me down. I was wondering if anyone else on here has it?
What is your age, and how does this disorder manifest itself in it's victims?
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Old 03-07-2014, 03:14 PM
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Quote:
Originally Posted by JiveTurkey View Post
I found out about a year ago I suffer from this genetic disorder and it's really starting to wear me down. I was wondering if anyone else on here has it?
I had not heard of this before. I had to look it up. Sorry that you have this.
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  #5  
Old 03-07-2014, 03:14 PM
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Ehlers

Sounds like a bad thing to have. My sympathies...
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Old 03-07-2014, 05:21 PM
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Aye, aye -- type 3 here! Thankfully I've found out early so that I can work on strengthening to hopefully ward off joint injuries for a longer time. My mother has had major joint problems and surgeries ever since the age of 30 and has lived in constant pain for many years now . Motivation for me to do my excersizes (not that she didn't do them -- we only found out last year).

What type are you?
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Old 03-07-2014, 06:01 PM
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Originally Posted by Jooseppi Luna View Post
Aye, aye -- type 3 here! Thankfully I've found out early so that I can work on strengthening to hopefully ward off joint injuries for a longer time. My mother has had major joint problems and surgeries ever since the age of 30 and has lived in constant pain for many years now . Motivation for me to do my excersizes (not that she didn't do them -- we only found out last year).

What type are you?
I've got the clinical diagnosis, but I'm waiting to find out if it's type four. Physicians being what they are I have to wait until JULY 9th until they can be bothered to biopsy me.

Most of my life I knew I was "double jointed" in odd places, where the humerus interacts at the shoulder, the heads of both femurs, ankles. Now I know that it's not double jointed ness but actual dislocations taking place.

I have had a few injuries that exacerbated my pain. I have broken both feet, three twist fractures on the left in the metatarsals (long bones) and an avulsion/Jones fracture of the fifth metatarsal on the right. Dec 25th of last year I had mesh repair surgery done for three hernias.

To put it bluntly it never feels like any two parts of my body are in the same place on two different days. I am 6'4" and weigh 200 pounds, I exercise regularly, but the pain in the last three years has been ramping up dramatically. I try to golf regularly but didn't play from '07 through '13 because I had frankly given up in ever being able to play again.

Suffice it to say this disease has changed my outlook on life.
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  #8  
Old 03-09-2014, 03:55 AM
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Sorry to hear you have to suffer through all that. I've always wondered if I have EDS or something similar, or if I'm just a regular flexible person. I started having severe pain issues/neuritis in college and was told it had to do with hypermobility, but after a lot of physical therapy that particular episode subsided over the course of a couple years and it hasn't been that bad since. I still get a lot of pain in my sacroiliac joints, which I can feel and hear move around a lot, and get a lot of unexplained pain, popping and locking in other joints. But no major dislocations. I've also had some recent idiopathic dysautonomia ... gastroparesis and hypotension/orthostatic hypotension, diagnosed three years apart. Plus I'm very myopic, elastic skin, heart murmur (no mitral valve prolapse though), etc. I suspect I'm just flexible (as opposed to a genetic disorder), and anyone flexible is going to have more wear and tear than the average person. My ankles, knees and SI joints in particular ... doing physical therapy now so hopefully that's all I need.
Anyhow, as a result of just being curious about it, I've read a lot on EDS and Hypermobility Syndrome and realize how much worse other people have than me. JiveTurkey, I hope you can get a final answer on your diagnosis and have a specialist help you find a way to cope with it. And Jooseppi, I hope knowing what you're dealing with and doing the phys therapy helps you ward off the problems your mom had.

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