AntiPhospholipid Syndrome

[priyab]

In June 2015 My sister was detected with IUGR in the 32 WK Scan. After an emergency c-section, the baby was premature and died due to NEC after 4 days.

My sister was tested for Anti Phospholipid Syndrome which confimed the presence of antibodies in her blood.

She is again pregnant 8Wks and is being administered with anticoagulants and other antibody related medication. Anyone having similar experience

or suggestions for taking care in this condition?

[cn72]

I have had 2 misses due to this condition sadly but i do know they should put your sister on heparin injections throughout her pregnancy to help both mother and baby. to manage it when she is not pregnant i am managed by a daily low dose aspirin. I haven had any clots sonce beginning this type of mediations. There are quite a few great books on this subject and they come either under the name of hughes syndrome or antiphosolipid syndrome. The best one I found was the book which is by the guy who actually first found the condition and thats a Professor Hughes the book is called Hughes syndrome the patients guide... There is also a group that would be useful for her to join as all the books and groups contain info on pregnancy. hughes-syndrome.org/self-he... hughes-syndrome.org/ This one is direct to pregnancy and Anti p hughes-syndrome.org/about-h...

Hope some of these help your sister. The good news is in the 80's most women would not have sucessful pregnancies but now a days with more understanding of this condition I believe the mortality rate is down to less than 25% so never give up hope and I pray your sister gets through this pregnancy with lots of babydust and great medical care,, I find it also a good thing to always remind who ever she sees during the pregnancy that she does have this condition as sometimes familiarity makes them less aware of things that can cause issue.

Good luck.

love n hugs

Clare

[priyab in reply to cn72]

Sad to hear about your losses Clare. Were you not aware of this condition when you suffered? I'm really scared to death this time, we were devastated by her previous loss. Thankyou fr sharing all important info.

GodBless!

tc

[cn72 in reply to cn72]

Hi Hun,

I was diagnosed in 2001 but it wasn't explained to me at diagnoses or at the hematology dept where i had to regularly attend just after. I knew I had 'sticky blood' and was at risk of developing blood clots but that was it really. Its only after the misses i decided to look into it a bit more as I couldn't find any other reason for the misses that's when I found out the effect it can have on the babies if not treated correctly. My own GP missed the fact that I should have been on daily heparin injections as my Antiphospholipid syndrome hadn't flagged up when I visited her hence I said earlier make sure every visit that they don't forget your sister has this condition. I am so sorry for your sisters loss and the loss to all of your family affected by this tragedy. There is every chance now she is diagnosed and being treated it will never happen again. Please ensure all your family are well aware of this condition and what it can do in all aspects of your sisters life. forewarned is forearmed thats my outlook on life now a days. you can never know to much about your health. In a way I was 'lucky' I guess that my losses were very early first one was at 6 weeks and the second was at 8 weeks. If I can help in anyway further please feel free to contact me.

Kindest Regards and good luck to you all.

Clare xx