Sticky Blood-Hughes Syndrome Support
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Ive been doing some research abou aps and i seem to keep coming across secondary aps ie lupus now ive been diagnosed with aps but wasnt told if was a primary or secondary but i had a stroke hence how they discovered aps but stroke seems to b rare on primary but common with secondary n my consultant told me im at high risk of having mre strokes as headaches seem b a trigger for my stroke and i get severe headaches few times a week so im confussed to which i have how do i go about obtaining this info as my medical care seems to be very poor x

5 Replies


this is a clip from the Hughes website....

Primary or secondary?


The antiphospholipid syndrome was first described as a complication of the disease ‘lupus’. However, Dr Hughes immediately realised that many cases – indeed probably the vast majority did NOT have any evidence of lupus. This gave rise to the term ‘Primary Antiphospholipid Syndrome’ (PAPS).

For those patients where the clotting tendency is secondary to another disease such as lupus, the condition is often called ‘Secondary Anitphospholipid Syndrome'.

It should be stressed that the majority of patients with ‘Primary’ APS (Hughes Syndrome) do NOT go on to develop lupus in later life. The inter-relationship between lupus and APS (Hughes Syndrome) is highlighted in this diagram, taken from the book ‘Hughes Syndrome: A patients guide', please see our publications if you want to order this book.


Primary APS is found in patients without an associated disease, or without

evidence of any agent that could have induced production of aPL. Many of the

cases of idiopathic recurrent pregnancy loss in the past are now known to be

part of APS upon detection of aPL. Secondary APS, on the other hand, is fond

in patients with another disease or in those having another cause suspected as

the one which induced aPL production. It does not mean that secondary APS

differs from primary APS, as the clinical manifestations of APS in both cases can

be identical.


Hi about the information, I didn't realise that I could get all my test results from the Gp, I think it is our rights to have a copy. Which is very useful when you are seen by different Hospitals, Doctors

I keep all my test results./ list of medical problems /medication list,/ blood group in a folder for Hospital appointments, and a small list in my purse as I would never remember it all

Karen xx


I am primary APS on a stroke, DVT & PE. No issues on recovery other than maintain an INR at about 3.5


Ahh pk thx i was just confussed with all the different ones x


Secondary APLS is usually when you already have a diagnosis of Lupus first.


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