Sticky Blood-Hughes Syndrome Support

Part of the community

I believe that I have had APS since I was a little child..After a year and a half of waiting for funding..I finally visited St Thomas' Hospital last Friday and will return again next month. I can't begin to tell you how empowering it feels to be a part of this blog community and to be seen by Dr Khamashta after suffering in mostly isolation for at least the last 35 years and with minimum support for the last 3 years..Hello !

15 Replies

hi -rhian--i have done some reading on dr.khamashta and his research with the syndrome and especially in the field of recurrent miscarriages. so i guess your starting out with a good doc anyways! you will find alot of imformative, warm ,compassionate, people here for you at a touch of your key board. welcome---------------------------- jet


Hello there, great news for you, and great news for us. Due to often misunderstandings and also lack of knowledge about this disease and other diseases at times associated with it, it can be very isolating. Thank you for writing this. Mary F x


ha -rhian -- where do you live, i assume somewhere in the u.k. but where, just generally ??????? jet


Hi Jet and Mary, thanks for your comments..I live in Wales, lol your my first two friends !


Hi there, quite a few people from Wales on here, perhaps your next question or blog.. along the lines of who is out there in Wales.. then you may gain some new friends in your actual area, which if of course always useful. Some local groups will in the future probably be set up, but you never know, you may live closer to some of them than you realize. Mary F x


I see Dr Khamashta at St T's too. Arn't we lucky!! So glad its all worked out for you. Maybe we will bump into one another one day as I always go on a Friday.

I don't know about you but I feel I have joined an exclusive Club!!


Glad things are looking up for you, its surprising how much of a relief it is, knowing that there are people here for you, even if you just need to write a blog and get some relief.


Hi hun, welcome to our community! :)

What a shame you went so long feeling alone :( I know a lot of us have been a while too thinking we were alone with all this, hopefully you will feel better just knowing we are here & we will understand you! :)

There are quite a few in Wales, so maybe you could contact some of them & maybe even meet up? that is always nice to do :)

I visit Wales everynow & you never know! :)

Hope you are ok today Sue xx


Hi Rhian and welcome! *waves*

I too am in Wales, I see a Rheumatologist and a Hemotologist locally but prior to that I went privately to London Bridge. Like you, I believe this condition has been with me for a VERY long time.

It's funny - since i've been 'in the APS club' (so to speak!) i've found several other people I know who have this condition, but who all have very different symptoms and haven't realised how common it actually is.

Siân. :-)


Hi rhian

welcome and glad you found us. Sorry to hear what brings you here.

I'm sorry to hear you've struggled alone and in isolation for so long.

We here when you need to share, the rants, moans, tears and the good times too.

Take care gentle hugs love sheena xxxxxx :-) :-) :-)


Hi Rhian,

Welcome to the group i am glad you found the right doctor for you and you more than welcome on this site and please do ask any questions , rants, info you may have we always happy to listen and help.



Hi Rhian ;-) im kathy i live in bristol so not to far if its s wales...

i too joined this forum almost a year ago now... i was so desperate for support and answers - bingo ;-) the support, friendship, information and opportunity to rant was here... it was a life saver... like its been mentioned we all seem to have different manifestations of this condition but one thing we got in common is the lack of understanding of many doctors of all specialities we come accross so being well informed keeping updated is a great tool!!

Its a great community & a big warm welcome to you look forward to hearing more from you love kathy xxxx


Hi Rhian

Welcome :-) I have found this community to be absolutely fabulous - maybe we should be called the AB-FAB APS group :-D anyhow - Any questions just ask - Keep well, be happy and smile often




All positive comments. For a lot of us, it has been a lonely journey. This site is a credit to Hughes sufferers.


Oh waw, thank you everyone for all your glad I was able to be productive in fighting for my place at St Thomas, even at times when it felt persistence was often my strength...have a restful weekend everyne!


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