Is it APS?

I have Hughes syndrome but I'm posting about a friend. She developed blood clots on the lungs 7 years ago and nearly died. She had all the tests and was told she had sticky blood with no known cause. Therefore, is not medicated. She has been fine since. She had two babies with heparin due to her past blood clot history. The last baby had a slight heart problem (is fine now) and she had the placenta analysed and was found to have clots in it. I'm concerned that the could be Hughes. As all her tests for genetic sticky blood and hughes were negative she doesn't take anything. I think something could have been missed.... Anyway thoughts would be appreciated.

3 Replies

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  • Hi please look at the post I put on a few days ago, with regard to the new Seronegative Hughes Syndrome, part of charity website. You need to go through the website with your friend and alert her to this part, and also she should then write to any of her medical team/GP with with the links to the charity highlighted and also in particular that page. Also look at our pinned posts on here with regard to Seronegative Hughes Syndrome. MaryF

  • Is your friend symptomatic at the moment? If she is not and not planning anymore babies then its possible that all she would need is daily baby Aspirin anyway as a precaution. If of course she is having symptoms then thats a different matter and even more important she should be seen by a APS specialist given her background.

  • Thank you for your responses. She doesn't have symptoms at present. Although has been left with scar tissue as a result. She was told if the breathing problems came back then go to the doctors. She's quite relaxed about it all which is good but I just wonder. I hope she will be ok. I guess we have to trust the doctors. The sero negative thing is interesting and must mean there are alot of people out there undiagnosed!

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