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  1. #91
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    I have. The issue is that i have a history of uterine rupture and PROM which most other EDS type 4 suffers have not had to endure due to total pregnancy monitoring. My last 2 were treated as a normal patient with quirks. (My specialists have cringed when reading the fact i had a manual placental removal with my son). I am so very lucky that i was so young and in the peak of health or the procedure would have killed me. ( as it was i needed a blood transfusion for PPH and i stayed in intensive care for 24 hrs)

  2. #92
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    Ouch. that does not sound fun. I always thought PROM could occur in any type of EDS? I suppose it would probably be more prevalent in type 4 though!
    My mum has no signs of EDS and no diagnosis but she had PROM & early labour with both my brother & myself. that was 23 years ago though so maybe they just never put 2 & 2 together.

    How old were you when you had your son?
    do they believe you will have a higher risk of death because you are older now? or is it just that you werent diagnosed with type 4 then so they couldnt warn you of the possibility?
    I know by the research I have done anyone with EDS seems to struggle more with pregnancy after about 24. for some reason that seems to be the age the collagen declines dramatically.

    It sounds like you had a hard time with your boy & blood transfusions & intensive care. you poor thing. that sounds sucky!!
    Are your kids all good now?? or do they show signs of EDS?

  3. #93
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    i had my son at 21 and my daughter at 22. I am now 28.

    I was not diagnosed until a few years ago. i grew up in not great circumstances and my parents believe in the grace of god and alternative medicines. I was not even able to go to an optometrist until i could afford it myself.

    My kids look like me. Do they EDS, I don't know but will be open to testing them as they get older. I don't put them in sports or any activity that could hurt them if they do though as that would be negligent.

  4. #94
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    Quote Originally Posted by tastychicken View Post
    i had my son at 21 and my daughter at 22. I am now 28.

    I was not diagnosed until a few years ago. i grew up in not great circumstances and my parents believe in the grace of god and alternative medicines. I was not even able to go to an optometrist until i could afford it myself.

    My kids look like me. Do they EDS, I don't know but will be open to testing them as they get older. I don't put them in sports or any activity that could hurt them if they do though as that would be negligent.
    That must have been difficult growing up without the opportunity to check out your issues. Did you have eds symptoms growing up?
    I spent much of my teenage years searching for an answer but it took over 7 years to find a diagnosis and that's with full access to drs etc.



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  5. #95
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    it is what it is. i am surprised that no doctor or anything put it together. i am very abnormal looking. i guess being super tall, skinny and blonde means everything is alright.

  6. #96
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    Yeh I was exactly the same. Used it to my advantage & got plenty of modeling work when I was younger. Now my body does not agree with that lol

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  7. #97
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    Default Are you guys still about???

    Hiya guys - just wondering if anyone is still around from this thread??? I got all excited coming across it today that there might be a few other people in the same boat as me currently (not that I'd ever wish something like fibro/chronic illness on anyone).

    I'm currently 17 weeks with my first, and have fibro, coeliac, Reynauds, PCOS (ecstatic at being preggo), a few other fun anxiety disorders, and a bunch of other suspected stuff; and I'm trying to find others with similar experiences/stories during pregnancy.

    Anyhow - wanted to say hello!!

  8. #98
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    Hello. I am still here. My pain unfortunately got worse in pregnancy and now i am on celebrex 400mg a day as well as voltarin and vitex for the pain so i can actually walk.

    How are you coping with pregnancy so far?

  9. #99
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    I'm still here too 😀. As well as the sarcoidosis, fibro, bursitis, chostochondritis, I also found I have nutcracker syndrome which is a kink in my left renal vein, and now synovitis in my right wrist. I'm wearing off endep as found it useless and have been on 200mg Celebrex for my wrist but no relief either. It just never ends sometimes!

  10. #100
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    Hello, I'm still here!
    Currently 32 weeks preg with a long list of illnesses & to add to that, cervical incompetence so I have had a stitch placed through my cervix + progesterone & on bed rest trying to keep my Lil man in longer.

    😊


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