Hughes Syndrome/APS.....what are the differences between these two?

[Mystynzl]

My doctor has said mine is Hughes...not APS

[gingersmum]

Hi

they are exactly the same, your Doctor sounds a little confused, APS has been renamed Hughes Syndrome in honor of Professor Hughes, ( I understand), who was the first Doctor to put the various symptoms together and realise it was part of a syndrome, your doctor may have confused APS with APSL ( Lupus) is my guess.

hope this helps

kind regards

[MaryF Administrator]

Hello, they are one and the same: hughes-syndrome.org/symptom... Mary F x

[Mystynzl]

thanks heaps....there was confusion as my discharge notes said I had APSL.....they also got my age wrong too.....i was 10 yrs younger.,...great compliment...i think

[Hidden]

Hey the age thing is great, I would take that any day!!

I don't think APSL is lupus, I think they may have meant APLS which is just another way of saying APS or Hughes syndrome.

Lupus is SLE- or at least the systemic type is....

[Hidden]

Hope this helps clear up the confusion:

Currently, there is a bewildering array of names for Hughes Syndrome including the antiphospholipid syndrome (APS, APLA or APLS); primary antiphospholipid syndrome (PAPS), the antiphospholipid antibody syndrome (AAS); the lupus anticoagulant syndrome (LAS); the antiphospholipid lupus anticoagulant syndrome (APLAS); the anticardiolipin antibody syndrome (ACAS) and ‘sticky blood’. Our charity calls it Hughes syndrome to acknowledge the doctor who was leading the London team who first described it in 1983.

To confuse things further one of the tests for antiphospholipid antibodies is called the lupus anticoagulant - nothing to do with lupus and not an anticoagulant but the double misnomers has stayed!

[paddyandlin]

This condition has so many names and this is one of the reasons why you need clarity and unity from the support orgs and professionals becasue if the pros have no idea what its called how are we suppose to.

[jessielou]

Hi hon

its all in a name. As my Gp said this morning, "you are one of those patients who has us all reaching for the text books"!!!!!! Oh please do was my response!!!! The others have said it all. A bewildering array of names for the same condition!!!

Take care gentle hugs sheena xxxxxx

[Hidden]

Hey you forgot Sludgeblood! My favorite moniker for Hughe's syndrome!

[Herb]

I hope this does not offend anyone, I was diagnosed with antiphospholipid syndrome in 1995 and have had it refer to many times in my hospital notes since, not once have I seen Hughes Syndrome or ever heard it from any of my doctors.

My understanding is they are the same thing but the term Hughes Syndrome" may be more common where there has been a miscarriage or obstetric problems?

[Herb]

ps I meant Hughes sndrome has never been writen in my notes or docs correspondences.

[paddyandlin]

Hi Herb,

It seams Hughes Syndrome is used by those docs who recocgnise Prof Hughes as the doc who found the illness where as thoise that do not use the medical terminalogy used.

I do not think is offending anyone i think it is just what docs recognises and then the patient picking up from what the doc has said or written.

paddy

[tim47]

They are indeed one and the same as we know but you need to know which to use and when. I think Rheumatologists, other than those at St Thoms, seenm reluctant to use Hughes and give our saviour his due recognition.

More of an issue are those who don't know either term. I saw one yesterday, a senior ENT surgeon and did my usual thing of mentioning Hughes as well as what I was there for but he hadn't heard either term - I ended up saying "sticky blood?". We cannot assue that even the best in their fields know about Hughes/APS mores the pity.

[paddyandlin in reply to tim47]

completely agree

[Mystynzl]

I am now dealing with my gp not the doctor i mentioned earlier. Well I have Hughes as that is what my doctor(gp) called it. He had attended Prof Hughes lectures in the UK back in the 80,s. The last time I saw my doctor (gp) we went through the medical books together. He makes me feel that I do have control. I am just clearing things up. The funny thing for me is the district nurse were calling it Anti Phosphorus lipid Syndrome.....lol lucky for them i kept away from water, heheheheheh.