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Ehlers Danlos - If you are very limber and double jointed by nature
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01-23-2004, 08:06 PM
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Guest
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Posts: 9
Hysterectomy:
Surgery Type: TAH/SAH
Ovaries: Removed both
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Ehlers Danlos - If you are very limber and double jointed by nature
If you are very limber and double jointed, check to see if you have Ehlers Danlos. It is a genetic disorder that many don't get diagnosed. But, it can have severe effects on your recovery and your surgery. EDS is a collagen disorder that limits your ability to heal and makes your muscles sore and
I have it and it can cause your ateries to be very fragile. It is why I bled excessively every month. An artery was broken during the operation as a result. The healing was very slow and the scars are paper thin and I am scared they will break someday.
So, get checked out for this if you tend to bruise easily, are very limber, double jointed, have premature aging skin....key in ehlers danlos in your browser to get more specific information. It can make all the difference in the outcome of your surgery if your surgeon is informed.
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01-24-2004, 01:15 AM
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Guest
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Posts: 419
Hysterectomy: May 27th, 2002
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I wonder
does it also cause delayed clotting times? I seem to remember my sister-in-law ( she was only 6 at the time) having her appendectomy cancelled due to delayed clotting time and needing further testing. It's sort of 23 years ago for me now so memory is a bit hazy but I also remember she had super flexible joints that led to problems with her knees and ankles as she hit puberty.
I didn't realise condition might have a name and wonder since my first son may of course have an inherited gene from his father for this same condition, he doesn't have children yet, but I like to gather info just in case.....
Thank you for posting this, it may be useful and save a lot of worries for many up and coming princesses, and hope you have now recovered fully, Linda
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01-24-2004, 06:29 AM
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Guest
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Posts: 9
Hysterectomy:
Surgery Type: TAH/SAH
Ovaries: Removed both
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Hi Lindy Lou
This syndrome continues to plague me. It seems that it gets worse as I get older when normal collagen depletion begins taking place. My mother is so decrepid that it is breaking my heart. My son has it and I am worried about his future quality of life. We are all seeing a geneticist on Feb. 5 to find out more. My son was diagnosed 11 years ago and the syndrome was traced through me to my mother because we are so limber and double jointed. The docs were very nonchalant about it so I didn't give it another thought until now when I am watching my mother go down. I went to the net to learn more about it to help her and found that all my miseries and frailties have their roots in this syndrome. And, that the syndrome requires much more attention than I knew. So, now, I am on a quest to be totally informed.
Endometriosis and excessive menstrual bleeding of which I had both, is classic to those who have EDS. I am not sure about the clotting, but I know that the capillaries and arteries/veins and valves in the body are more fragile than other people's due to the collagen insufficiency. My doc broke an artery during the hysterectomy because it was so fragile. I bruise easily and I heal slowly when cut. My scars are either paper thin or thick adhesionlike but never normal.
Keep in touch. I can be reached anytime outside of here on aol or yahoo instant messenger with the same handle.
Mary
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