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RAISING AWARENESS!!!!! please 'HELLP' me

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

RAISING AWARENESS!!!!! please 'HELLP' me

Postby kelsangel » Mon Oct 22, 2012 10:09 am

by kelsangel (1 Posts), Mon Oct 22, 2012 10:09 am

Hi everyone, I developed HELLP in march of this year and lost our daughter :-( I almost lost my own life too. I was 16 weeks and 2 days when I delivered, I am wondering if I am the earliest as it is looking this way.

Since I have done a lot of research and campaigning for awareness along with some fundraising. I have been in touch with the NHS here in the UK and they have changed their wording of symptoms and signs as previously they said it cannot happen until at least week 20, they have reworded this now. Also the college of midwives have forwarded my concerns to those who compile the curriculum for trainee midwives as they too realise there is not enough information provided to pregnant women.

I set up a Facebook page for fellow survivors, a place to chat and take comfort from others, please PM me if you are interested in joining us.
kelsangel
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Re: RAISING AWARENESS!!!!! please 'HELLP' me

Postby blythe » Mon Oct 22, 2012 02:26 pm

by blythe (3060 Posts), Mon Oct 22, 2012 02:26 pm

Hello Kelsangel and welcome! I'm so glad you found us and so sorry you had to.

I'm not sure, you might be right that you are the earliest HELLP case here, such a sad distinction. I've read of women getting sick as early as 15 weeks, but it is exceedingly rare. I'm so sorry again that you were one of those rare cases. Have you been able to talk to a high-risk consultant since your HELLP experience and your baby's death? Our experts tell us that women who get sick so extremely early might have underlying predispositions that might contribute to a difficult pregnancy. It could also be just very bad luck, but maybe the doctors could find something that could be treated before you try to get pregnant again.
http://www.ncbi.nlm.nih.gov/pubmed/17666652
http://www.ncbi.nlm.nih.gov/pubmed/17576561

It sounds like you've done amazing work raising awareness! I saw that you have some connection with APEC in the UK. I wonder if you've also seen the PRECOG guidelines http://www.apec.org.uk/precog.html . Right now our Experts are working on similar guidelines for the US.

If you would like to coordinate fundraising or any other effort, please feel free to contact me - heather dot curtis at preeclampsia dot org or laney dot poye at preeclampsia dot org. We'd love to share our efforts!

(PS - I had to make an edit on your original post, I'll PM you in just a minute to explain a little more.)
Heather, mom to
#1 7-18-03 - 5#8oz 37 weeks PE/PIH
#2 8-11-06 - 6#14oz 37 weeks PE/PIH
#3 9-10-09 - 5#10oz 37 weeks PE/PIH
blythe
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