Is hughes syndrome and antiphospholipid syndrome the same thing

[sherrymorgan]

Is hughes syndrome and antiphospholipid syndrome the same thing

[Star13]

in short yes!

[penmaker]

My understanding is Dr. Hughes identified APS, so may people "named" if after him.

[lupus-support1 Administrator]

Yes. Dr Graham RV Hughes was the doctor who “discovered” this syndrome. He is one of the few who has a syndrome named after him and is living!

He has awards from all over the world in SLE & Hughes - except his own country: the UK. IMHO, he should have received a knighthood, but it seems envy wins out & he is ignored!

[GinaD]

I my 20+ years since diagnosis I have encountered many health professionals who are totally ignorant about our malady. Many others know it by this or that name. So, when reciting my health history to a new caretaker's nurse, I rattle off all the names: "APS, APLS, Hughes Syndrome, Antiphospholipid Syndrome, and ( my favorite for newbies) Sticky Blood Syndrome." I then go on to explain, " Its an autoimmune disease, similar to, but distict from, lupus. Not well understood, or recognized, so don't beat yourself up if you've never heard of it before."

[nyctapdancer in reply to GinaD]

I am dealing with a hematologist right now who has not one clue about APLS although he is said to be a coagulation disease specialist. Not only did he not listen to me, he tested me to see if I actually have APLS -- even though my records of the past 25 years clearly say I do.

I'm facing surgery this Friday and I had to fight to be allowed to stop Lovenox 12 hours before instead of 24. He also was "astounded" that we keep my INR between 3.5 and 4 and that I eat leafy greens all the time (I'm a pescatarian.) etc.

Truly scary to have my life in his hands. I fought to have my pulmonary doctor get involved and to get him off my case. Sigh.

[GinaD in reply to nyctapdancer]

Time to change specialists? There is a US based APS ( APLS -I forget which) that has a list of US APS approved docs.

[nyctapdancer in reply to GinaD]

Hmm. How would I find that?

[GinaD in reply to nyctapdancer]

APSFA.org

[nyctapdancer in reply to GinaD]

thank you!

[user666]

APS was not discovered by Hughes. In the early 1900 they tested and identified anti cardiolipin antibodies using a syphilis test to identify reasons for clots and miscarriages. Doctor Hughes assemble his reasearch team decades later to learn more about APS and did further a bit of our knowledge of the disease but so did many other international groups at the same time and others developed better assays. And since that time far more has been learned and his treatment suggestions( based on observations not controlled studies) are no longer prevelant or recommended as we learned more. Asherman is another doctor, from South Africa, who is better known in the US and often has CAPS referred to as his syndrome. So in the UK Antiphospholipid may be referred to as Hughes syndrome it is not so in the US.

onlinelibrary.wiley.com/doi...

[Tofino5 in reply to user666]

Thank you for the link to the article.

[dillty in reply to user666]

thank you for posting the link to this article.

[Ray46 in reply to user666]

I seem to recall (might have it wrong though) that Prof Hughes was specifically investigating pregnancy loss, at least initially, and there still seem to be some medical folk who associate "Hughes Syndrome" purely with pregnancy (loss) (ie. Obstetric APS). Even when I was diagnosed in 2015, when"APS" was less common term, several times I got "hughes syndrome? isn't that erm pregnancy?" - seeing as I am a full bearded 6ft+ bloke. Hence I started to always use AntiPhospholipid Syndrome or APS. These days that same confusion would probably result in the doctor just quietly ticking a "trans" box somewhere and checking when I last had a smear test...

Confusion is always best avoided when talking to medical professionals.

[user666 in reply to Ray46]

Here in the states we generally only treat pregnancy positive apls transiently during conception through a few months postpartum. Aps is only diagnosed after clotting and is referred to as TAPS, for thrombotic antiphospholipid syndrome. Honestly, Hughes is not as well known academically in the US as he is in his native land and APS is never referred to as Hughes’ syndrome nor sticky blood in well known teaching hospitals.

[Star13 in reply to user666]

Are you a Doctor or in the medical profession?

[Ray46 in reply to Star13]

No, but have lived with medical & veterinary professionals since student days, and married one of them (veterinary), helped her revise for all her clinical finals. So even before all the reading I've done on my own conditions, I learned a fair bit by osmosis, I can understand and speak (a bit) of "doctor", and I may lapse into it sometimes.

[Star13 in reply to Ray46]

thank you you Ray but I was asking user666 that question. Unfortunately the reply system on here isn’t that straight forward!

[lupus-support1 Administrator in reply to Ray46]

Indeed, there was a special pregnancy clinic under another excellent consultant and specialist.

[Star13 in reply to user666]

That is a really old paper and now after more recent reviews quite outdated and misleading.

[MaryF Administrator]

Yes Hughes Syndrome and APS the same thing, first described by Professor Hughes and his team. MaryF

[KellyInTexas Administrator]

it’s very exciting that the anti phospholipid syndrome is being studied around the world now-

scientists are carrying the torch forward, very important , critical pieces before before professor Hughes described it as an actual syndrome in 1983, and now the syndrome is being furthered by several world renowned academic centers.

[lupus-support1 Administrator]

I have some information I can share with you - just watch, read or don't. Take what you need.

There is whole series of videos with Dr Graham RV Hughes, who was my consultant for many years, until I left the UK.

psychscenehub.com/video/clu....

psychscenehub.com/video/ant...

There are many other short videos with Dr Graham RV Hughes on YouTube.

Review Clin Rev Allergy Immunol

. 2007 Feb;32(1):3-12.

Hughes Syndrome: the antiphospholipid syndrome--a clinical overview

Graham Hughes 1

pubmed.ncbi.nlm.nih.gov/211...

Hughes syndrome (the antiphospholipid syndrome): a disease of our time

Graham R V Hughes 1

pubmed.ncbi.nlm.nih.gov/174...

Hughes Syndrome: the Syndrome Behind the Name (the antiphospholipid antibody syndrome)

ima.org.il/FilesUploadPubli...

I can also add, that in his office, he has awards from all over the world for his clinical work: except the UK. Sadly, as with all great men, there are those who are envious/jealous. I have known him for 30 years. Modest, unassuming and as excited about making patients well as possible. It was Dr Hughes research, which led him to describe the syndrome in 1983.

There is sufficient data to show that it was Dr Graham RV Hughes' clinical and research work, which led to his being honoured with the Hughes Syndrome.

I hope this is helpful - apologies for any errors, but I have just had an infusion and feeling a bit dozy!

Be well!

[HollyHeski Administrator]

Thank you so much for posting - a nice lot of reading especially for those new to the syndrome.For me, when I was diagnosed it was explained to me that originally called Hughes Syndrome, later internationally APS - but Prof Hughes still and always being the one that identified pregnancy APS and Lupus links.

[user666 in reply to HollyHeski]

as early as 1963 the pregnancy and lupus connection was already known pubmed.ncbi.nlm.nih.gov/140...

[HollyHeski Administrator in reply to user666]

Before my time and unfortunately I can't open your link.As you say UK awareness is different to USA.

[Star13]

user666 It is one of the rules of HU and a courtesy to each community here that medical professionals identify themselves. Could you answer the question please - are you a medical professional? Thank you

[Ladydale]

Yes Professor Hughes discovered APS hence the name Hughes