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?
Sticky Blood: Since when has this... - Hughes Syndrome A...
Sticky Blood
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Elaine77c
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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
Elaine
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.
Xx
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
Elaine
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.
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!
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
Lou
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.
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
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.
Kerstin
MaryFAdministrator
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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