thread: confused...primary anti-phospholipid antibody syndrome

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  1. #1
    Registered User

    Oct 2006
    home sweet home.
    1,995

    Sweetie, I don't know anything about that syndrome but I wanted to pop in and give you my deepest condolences for the loss of your three beautiful babies. You are an amazingly strong woman.



    Spring xx

  2. #2
    Registered User

    Jan 2006
    8,369

    Hi Hun. This is something I may have, so I have done a LOT of studying on it!

    Once you have been diagnosed, you take Warfarin (NOT aspirin!) during pregnancy; this thins the blood enough to allow the important nutrients to pass through to the placenta and the baby.

    If you do a google for Hughes' Syndrome there are some GREAT UK websites which detail all the pregnancy and pre-pregnancy details you will probably ever want to know. It's quite hard to find people who are really up on it (and I live near London, where it was first described!) so it's important to be the informed patient and bring things like essential medication lists to your GP and search the literature (PubMed is a great resource) to back you up.

    Best of luck to you.

  3. #3
    Registered User

    Mar 2007
    sydney-Australia
    6

    thank u all 4 ur kind words & advice,
    i was told i had primary anti-phospholipid antibody syndrome at the age of 16yrs old when i lost my little boy harley im now 25yrs old & since my baby boy lost 2 little girls my last 1 i was put on clexine where i had 2 inject myself twice a day, while im not pregnat i take warfarin every day 4 the rest of my life,
    at the age of 16yrs old i had no idea what the doctors were telling me they kind of dumped it on me with sorry love ur baby has passed away & u also have primary anti-phospholipid antibody syndrome its taken me 9yrs 2 take in what is really goin on in my body i now know when my illness is playing up,
    i think my reason 4 posting a message was i just needed 2 get it out of my head that im scared 2 try again my partner daniel keeps telling me things will b ok...
    so thanx again ladies

  4. #4
    Registered User

    Jan 2006
    8,369

    It's so hard to take in all at once like that, you poor love.

    As you say, you now know your illness and when you're having a bad day, so you can discuss this with your doctors first and find out if you need to up mediction on a bad day or if they can give you something else... it's so important to discuss this first as there's loads of things that change in the body while pregnant and it's great you can recognise what's your illness and therefore what's not while you're pregnant.

    It's perfectly normal to be scared, even without your diagnosis, so don't feel alone. BB has a fantastic pregnancy after multiple loss/late loss area so you'll have LOADS of support from women who have suffered too so you won't feel so alone.

    I've been suffering since about 15-16 too; only now we're looking at a diagnosis (which may not even be this). So I can recognise the bad days and the good, but still don't have any treatment. It's so frustrating when your body acts like this, but sort of nice to know you're not alone with it IYKWIM.

    I'll be looking forward to hearing how you're getting on and what decisions you make.