Any Information

Hey I finally found out which lupus I have and it's lupus anticoagulant also known has Hughes syndrome. Was wondering if anyone knew the best sites to find out more about it?

[MaryF Administrator]

Hi this is the site you need, you don't have Lupus, it is a misleading name given to an old test, if you have a positive you have Hughes Syndrome/APS. Where are you located? Lots of useful pages to read on the charity website, including about the blood tests....hughes-syndrome.org/about-h...

Hughes Syndrome.APS, or Some know it as Antisphospholipid Syndrome, or even sticky blood, however most doctors that I have met now it as Hughes Syndrome, and tend to use both names. MaryF

[Hidden in reply to MaryF]

Yh that's what it is, just the rheumatology called it lupus anticoagulant. I'm from West Yorkshire and thanks I'll have a look on the site

[MaryF Administrator in reply to Hidden]

Ok... we do have a list of recommended specialists both NHS and private: hughes-syndrome.org/self-he...

It would help your GP to help you more effectively, if you are under a person who fully understands the condition.

MaryF

[Lure2]

Hi,

I have Lupus Anticoagulant, one of the three bloodtests they do to look for APS (Hughes Syndrome). I have all three positive.

Follow the advice from Mary and please stay on this site where you can have good answers from our friendly members. Very important to have a Specialist who knows what symptoms to look for leading to APS. So very few doctors know about this rare illness and that when we are properly anticoagulated from our very sticky blood we feel ok.

Best wishes from Kerstin in Stockholm

[tim47]

Agree with what's been said and would add that if your doctor has told you that you have the condition/disease Lupus Anticoagulant, then to me that's a sign they are not well informed. Try and get referred to a specialist.

Like most here, I have Hughes Syndrome aka Antiphospholipid Syndrome aka APS aka Sticky Blood, and like fewer ,but including Kersin, I too have the Lupus Anticoagulant . .For decades I only knew my condition by the Lupus Coagulant name ( a misnomer as the problem is coagulation not anti-coagulation) and it was a tremendous relief to get the right name and access to all the information from here.

Best wishes

[jetjetjet]

Good point Tim --

Good advise HERE FOR YOU AND ANY HELP YOU MAY NEED.

Welcome Mystic .

I am also a triple positive with Kerstin and Primary to boot you will find more about you here .

Casey and I from across the big puddle.