Sticky Blood-Hughes Syndrome Support
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hello, i am new to this and don't know much about HS. My father had HS and died from multiple strokes 3 yrs ago, i tested positive for a

marker 4 months ago and am currently 8 months pregnant, i cant take aspirin as react to NSAIDS, I had a suspected PE and was put on heparin had a VQ scan which was clear so they took my off heparin, i was told i need to be retested for HS after ive given birth but the hospital don't seen to have any concern for me regarding HS, I have had previous miscarriage and 1 x preterm birth at 26 weeks. I dont really know what to do, how long to wait or who to go to for retesting/information or advice on what to do, if i will need meds etc.... some one please help. i am rather worried as i have children and will they need testing.Thanks to any one who can help. vikki

4 Replies

You really don't need this worry when you are 8 months pregnant do you? How long since you came off the Heparin and where are you situated? Are you in the UK? It sounds like you need to see an APS specialist with knowledge of pregnancy and quickly. The only one I know personally (others may come on and suggest something else) would be Prof Muntha Khamashta at London Bridge Hospital. He is private but you would get an appointment quite quickly.

Let me know the answers to the above and I will see if I can help.

1 like

Hi I agree with the above advice, it sounds as if you are not being given clear advice, please do ring up Professor Khamashta at London Bridge and explain that you need some urgent advice, let us know how you get on. Regarding children, try not to worry, it is not definite that this wiill show up in your children, in some it does, but it is best to wait and see. Mary F x


I had a PE confirmed by a CT scan. Did your doctor recommend one for you, or maybe you can't since pregnant?. What else do they recommend


Hi, yes it is quite clear you need to talk to a specialist in the field of APS as it sounds like you are not getting complete support & you need it.

As for your other children having it, it has yet to be confirmed that all of our children will get it passed down to them, I believe in some families it may well be the case but in others it is a trigger that causes it....operation / shock....

Try not to worry so much, I know this is not easy, but try to get your gp to contact a specialist to give you the correct advice & support you need, Sue x


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