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hayley
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Hayley, you should see a geneticist or genetics counselor for the answer to that question. It is believed that EDS is an autosomal dominant feature. With autosomal dominant genes, if you're the only carrier (your parnter not), then typically, it's a 50/50 shot.

See the EDS website for more information on heritability.

http://ednf.org/

Nina

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The other link was to the main entrance of the site, this link is directly to "heritability"

http://ednf.org/inheritance.html

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briar, I have EDS III and my pain management doctor wants me to start oxycontin for the pain, on a 10 mg 2x a day dose, permenantly. Unfortunately, my pharmacy will not fill the script--I'm going to have to take it to the hospital where the doctor works in order to get it filled.

Nina :D

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I have EDS also, but I am having a lot of problems with pain control. My pelvic bone keeps dislocating. I take Ultram, but that is not working. Nina, do you go to a pain clinic? If so, what do they do there? I am seeing a new rheuamatologist who is familiar with POTS and ehlers danlos, but my biggest problem is that I can't take any narcotics because it drops my BP so low and I get severe tachycardia. Any suggestions? Dr. Grubb told me that it was a 20% chance of my offspring having it (I think that was the percentage, but don't quote me on it). I am in the same boat as you Hayley... I want to have children very badly, but is it unethical to put my wants in front of a child's health?? I have been thinking about that a lot lately, but I am going to see a geneticist in March so I will post on what he/she says! Sorry for the somewhat philosophical questions!! :D

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Jaime, yes, I go to a pain management clinic. My doc calls me his "bad penny" because I keep turning up when he thinks he's seen the last of me :D He was bummed about my failed surgery.

Pain management docs are typically a subspeciality of anesthesiology. His job is to help address my daily pain, as well as acute problems, such as my spinal pain. He's done spinal epidurals for me--inserting a needle into the disc with lidocaine and steriods, to help stop swelling and pain. I've had 3 of them in the past in 2000 through 2001. I will have another epidural (one shot iin each of the 3 discs) in each of the herniations--and can repeat that every few months up to 3x per year.

Nina

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thankyou everyone for your replys.i havent been prescribed anything for the pain yet.ive got to see a pysiotherapist sometime not sure how as im still fainting everyday.i cant live like this anymore. im usually positive. im just having a bad day.im still waiting for the results from my tests in london.its been nearly two months.anyway thankyou again take care.

hayley

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Hi Everyone:

I have POTS and EDS....born with both and they are both difficult. That's the bad news. The good news is that I have two very healthy boys (3 and 6) and neither of them got any of my laundry list of of medical problems.

Motherhood is the most wonderful thing in life that I can imagine. For me it was worth the risk. I was worried about passing a difficult life on to them, but I also realized that there are NEVER guarantees with anything but that shouldn't keep you from living.

Good luck!

Kristen

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