Is it APS?: I have Hughes syndrome but... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,354 members10,542 posts

Is it APS?

Hopingforababy profile image
2 Replies

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.

Written by
Hopingforababy profile image
Hopingforababy
To view profiles and participate in discussions please or .
Read more about...
2 Replies
MaryF profile image
MaryFAdministrator

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

Hopingforababy profile image
Hopingforababy

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!

You may also like...

APS

just had a blood clotting test and it came back as over 70, can depression make your blood clotting...

APS

a wast of time she could have told me the think over the phone she asked me when I had my stroke...

APS or Not

who repeated the test and it was 18... he told me that I did not have this because it had to be 40...

APS

for 2 weeks iv had a lot of Pain in them and they are dead I feel like they no blood in them and the

APS

suspected meningitis than after doing several test they found i had APS was told back then that was...