Sticky Blood-Hughes Syndrome Support
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Should I get my daughter tested for Hughes?

I have Lupus SLE and Hughes - my daughter (18) is a mini me at her age, migraines, constant headaches etc - she has had an APTT clotting test and came out at 35 and 37 the second time - I think this is above the normal range?? Does anyone know if it is?? If so, I think I should ask her doc to get her fully tested - they said they would not if she was normal..... Any help would be great here.. It took me years to find out about APS/Lupus and I suffered misscariages/Stroke etc before I got the diagnosis, I do not want to ignore my daughters symptoms to date and leave her to possibly have a stroke, DVT, or god forbid a misscarriage or two..

5 Replies

I was asked by my new consultant how old is your daughter and has she been tested explained she had not shown any symptoms (migraine) told she should stil be tested anyway , she has said she will look into it.

ask your consultant

sharon xx


Hi Mary

Welcome and glad you found us, so many of us have the same worries about our children and whether they should be tested, some drs say yes some no. I think it's go with gut feeling on this, if she has symptoms, like mine do they should be tested, although tests not always reliable, can have negative tests and be sero negative Aps, lupus etc.

Lots more research needed to determine whether there is genetic factors involved a lot of dr s say not, but some families do have a strong history of autoimmune conditions.

I feel for you having gone through lots of similar things to you and taken so long to get a diagnosis. Really don't want our children to suffer the same for the sake of a few blood tests and aspirin if diagnosed early enough!

Insurance issues with Aps are the other side of the coin, I have had no luck in getting life insurance and understand travel insurance can be expensive with Aps.

Hope you feeling ok today.

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


Can understand, but beware! My daughter was tested because of bad symptoms, but was negative. Now she can't get mortgage/life insurance just because she was tested. I agree with what Sheena says about no genetic proof yet.

Good luck Ann


My daughters were tested when they were 15 and 16. the pediatrician felt it best to check the results. Thankfully they were negative and I pray they always stay negative.


I believe you should. My sister was tested and my oldest son. I plan to have our youngest tested too. I'm new into researching but I noticed comments like, not right now or it might show up again. Can anyone clarify: will can test positive sometimes and negative others? Is that correct ?


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