Sticky Blood

Since when has this community been called the Sticky Blood-Hughes Syndrome community. I know I have been absent for a while but really?? If anything calling it the Hughes Syndrome/APS community would be more understandable. Not ONE person I have been in contact with in any of my many hospital incursions with this condition has EVER called it Sticky Blood Syndrome. Was there a vote that I missed?

22 Replies

  • Please read down the Posts to see when this Forum changed its name. It is no longer associated with the Hughes Syndrome Foundation.

    Im sorry you don't like the name. Sticky Blood is a common name which is used by many lay people and Doctors to give our Syndrome a "common name" which people can understand. If you look at our "About Us" section above, you will see that it states clearly that we are a Forum for people with Hughes and Antiphospholipid Syndrome.

  • Hi APsnotFab

    I have just read down through the posts and see this was about a month ago, I still don't understand why you didn't go with APS-Hughes Syndrome? APS is used more frequently on this forum than is sticky blood. I would also point out that the NHS site for patients on medical conditions does not use the term 'Sticky Blood' as an alternative to Antiphospholipid Syndrome, whereas they do use Hughes Syndrome. Sticky Blood is to my mind on the same level as saying someone with Rheumatoid Arthritis has 'Swollen Joint Syndrome'. It was obviously a decision made after some discussion but I can't help but feel that it was not the right one. I don't have to agree with the name to agree with the sentiments and purpose of the forum, but consider it sad that this forum has joined with Health Care Professionals who don't think that people will be able to understand what their condition is if it is given a more complex name!

    Sorry to be a voice of dissent


  • Everyone is entitled to their opinion and that is yours. We of course also had to consider that we could no longer use a name that was similar to or the same as the charities former name or there would be a lot of confusion.

    This is above all a support forum for patients not a medical forum for Doctors. We try to be as informed as possible but posts are peoples own opinions or links to informed information.

    One of the most trusted pieces of information that is advised for people to read when first diagnosed with Hughes/APS is "Sticky Blood Explained" which is advocated by many Doctors. Many countries also refer to this condition by many different names but the most common name that it can be referred to is the one we have chosen along with the man who discovered the disease.

    Whilst we all may have personal opinions about appropriate names for this support forum, what we eventually came up with and which was endorsed by the man who founded the disease himself, we are very happy that we found a happy medium which most people will recognise and understand.

  • APsnotFab, et. al:

    I. for one, deeply appreciate the work done by the moderators and the members on this web site. I somewhat understand the disassociation that resulted in the name change. Whatever the issues, keep pressing on! Your work is valuable.

  • Thank you that's appreciated.

  • I don't know if this helps but I've been vaguely aware of, and even tested for APS. But I had not actually made the connection with this and my own sticky blood test results. So for me this new title was quite helpful - especially alongside Hughes.

  • I don't know about a vote or name change but at my local hospital they ONLY know about sticky blood and have no idea about Hughes syndrome or APSor that they are all the same thing so I think it must be a regional or PCT to PCT thing.

    Excellent news that your local hospital knows what it is.

    One if the student obs/gyn I was under when having my daughter made it her mission to educate people after knowing what Inwent through and made her dissertation and end of year presentation on it.


  • Great to hear about some awareness going on. Last time I was in the acute assessment ward at St T when they thought I had a DVT, I was sent 2 students to educate and was only two happy to spend half an hour with them. They had never heard of "Sticky Blood - Hughes Syndrome" and were fascinated. I may have even pushed them into a specialty! 😀

  • Funnily enough Dr Khamashta diagnosed my daughter with sticky blood - on her St Thomas's letter he states she has sticky blood. Only now have I noticed it has changed, but it's nice laymen's terms - If you tell someone you have Hughes syndrome or APS they haven't got a clue what it means, whereas sticky blood sort of explains it? But does it matter - it's a great site for info/help and we're all in it together. (My daughter also has ME/CFS - she gets very upset if I tell people she has ME, she says, mum it's chronic fatigue syndrome). As long as the medical professionals understand. (I'm not an administrator and no vote but as long as the site's here for us all.............

  • Hi All

    That is the point I sort of came to in the end - I don't have to like the name to like to forum and its values!! I see Dr D'Cruz up there and he's not used to 'Sticky Blood' verbally or in writing - I may bash him over the head with a rolled up newspaper if he does!

    I will personally never use the term, scowl crossly at any medic who dares to use it in my presence and just agree to disagree regarding its use in general.

    Best wishes


  • I've heard it called Sticky Blood quite a lot, so do think its a good term to use...

  • I've heard it called Sticky Blood syndrome by many professionals as well as the book by Kay Thackray being termed this way, it seems bizarre you've never encountered it to me, am unsure why it could upset you?

  • Hi Herbs77 - see Dobiedogz comment down further, who ably explains why it is rather upsetting for some - including me.

  • I read that this morning and am trying to understand your issue, unfortunately I think the various labels our disorder has is of trivial concern within the larger scheme of things, that's my opinion, sorry.

  • As I understand it APS, thanks to Prof Graham Hughes, comes from England but will be known woldwide these days. I come from Sweden.

    If my school-English had been worse I probably had not read "Sticky Blood Explained" and "More Sticky Blood" by Kay Thackray and in that book understood from her symptoms that I had APS and had to do what the Doctors told me: start anticoagulation with Warfarin. Thank you Kay Thackray!

    In Sweden we say Antiphospholipidsyndrome (APS) and never Hughes Syndrome or Sticky Blood. I think Sticky Blood or Hughes Syndrome is a better word for it as we have so many combinations of capital letters for at lot of illnesses. It also says what it is all about.

    I do not care what you call it here as long as I can have the opportunity to be on this very good site and have contact with the Admins and its wonderful members all over the world.

    Thank you!


  • Thank you Kerstin

  • I to believed sticky blood was an out dated name....believing it to be used as a possible description of the condition...?!

    I thought and had been told it was important to raise awareness of APS and or Hughes Syndrome which is hard enough outside of specialist offices and evan anticoagulation clinics etc...

    Dr Kashmater also diagnosed me and called it Antiphospholipid syndrome / APS as does the other specialist for APS I now see as did my local rheumatologist.

    All my letters from all different consultants list diagnoses as antiphospholipid syndrome no one has ever called it sticky blood...!!!

    I'm with elaine on this I'm afraid and also missed the name changing post and was taken aback when I saw it.

    I believe sticky blood should not be the first thing you read as raising awareness of a condition is being watered down by giving it so many titles let alone the wrong one


  • when first diagnosed (in the US) my Rheumatologist reported I had "tested positive for sticky blood disorder"...good way for me to understand..she then added info on the medical name APS

  • When I was diagnosed it was referred to as Lupus Anticoagulant, I always refer to it as AntiPhospholipid syndrome, Personally I think referring to it as sticky blood trivialises it. I'm not 5 so don't talk like a 5 year old and most doctors have no clue about it whatever you call it. In fact I was told yesterday it was no big deal, my response to that was well tell me that after you've had two strokes and are left disabled and suffer the side effects that I do and I think I've got off light compared to many.

  • Hi Dobiedogz,

    Lupus Anticoagulant (as we probably both have in common) is an antibody known also as LA, not a diagnose.

    It is not Antiphospholipid syndrome or an illness.


  • I know that but how does that explain a doctor giving that as a diagnosis. He was at pains to say it wasn't Lupus but never once used the words Antiphospholipid syndrome or Hughes, I found out what it was really called on here.

  • I am sorry you missed the original announcement, the name came about as we separated from the Hughes Syndrome Foundation, our forum is very big now, we remain supportive of their work of course, and the name change had to be this way around rather than Hughes Syndrome-Sticky Blood, which would have caused confusion and been too similar. We are so grateful for the great feedback plus the professional feedback we are receiving, we do this, unpaid because we care. We have great plans for the future and will keep you updated. MaryF

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