What's in a name?

No doubt many of you will have been confused by the bewildering array of names for Hughes Syndrome ...

Currently, buzzing around are: the antiphospholipid syndrome (APS); the antiphospholipid antibody syndrome (AAS); the lupus anticoagulant syndrome (LAS); the anticardiolipin antibody syndrome and, not forgetting, good old 'sticky blood'.

One thing is for certain that when you go to be tested, they are looking for antiphospholipid antibodies (aPL). As the condition is so new, the name has its own kind of energy amongst international researchers and clinicians and hasn't yet settled.

For the time being, we will stay with Hughes Syndrome named after the doctor who was leading the team who first described it in 1983, but hope this doesn't add to the confusion!

I should imagine in a few years from now, there will have been some international standardisation and we can finally all agree on one name.

[MaryF Administrator]

This becomes an ever more mind boggling mine field of information sifting/sharing and cross referencing, whilst beating a path to the nearest helpful medical arena.... if somebody happens to fit into the tricky group of 'seronegative antisphosolipid syndrome (Hughes Syndrome).

[paddyandlin]

lol its amazing how many names people come up with it or mistake it for lupus really weird.

[Hidden]

I have to confess to confusing it with Lupus until very recently - but that was the way it was introduced to me by the hospital - they referred to it as Lupus of the blood, and I get treated in the Lupus Clinic for my APS too... and i thought i was quite bright!!! Tx

[Hidden]

Yes, it's all very, very confusing for people - particularly as one of the blood tests which look for antiphospholipid antibodies is called the lupus anticoagulant - a double misnomer, nothing to do with lupus (it was originally found in a group of lupus patients with secondary APS) and not an anticoagulant. However, there is no way we can get the labs to change it!

The best way I've heard Hughes/APS described is as the cousin of lupus.

[paddyandlin]

thats sounds like a good idea i have always found you say APS they look at you blankly you say Lupus oh yes lol drives you nuts lol

[nyctapdancer]

i was diagnosed with it as APLS, and i'm sticking with APLS :>)

anytime drs don't know what something is, they call it a syndrome.

[Hidden]

That's another one into the mix then! APLS - I will add it to the ever-growing name database The syndrome part comes from the combination of one of the positive tests (either for aCL, LA or a-beta2-GP1) and symptoms. You can still be positive for one of the tests and not have symptoms - then you won't be diagnosed with the syndrome. All very complicated ...

[Hidden]

Don't forget sludgeblood!

[wulfric]

When I was first, diagnosed, I was told I had lupus. After several days in st Thomas' with the lupus team, it turned out to be hughes syndrome but with lupus like symptoms. So now all my reports say, I have HBAS as well as avascular necrosis of the hips.

[stillwaiting]

I have called it Hughes Syndrome in respect to Professor Hughes who quite frankly, by working on this, is changing my life. I have been diagnosed for just 5 days but have been ill for maybe 20 years - I lost my babies 18 years & 17 years ago.

On Friday my specialist kindly said that I need to learn the full name as well to help other medics - I just laughed, "When your speech is as bad as mine with memory to match; you have to go with the easiest to remember option. So it's Hughes Syndrome - they can always "google" it!!" LOL.

Lynn