Sticky Blood-Hughes Syndrome Support


HI, I was given my diagnosis on Friday, after having a stroke in March I have many tests and seen, neurology, rheumatology, dermatology and cardiology. The Rheumy told me that I have APS on Friday and since then I have been in a daze. I really thought when I went in there that he was going to say they could not find anything wrong, as the neurologist made me feel like it was all in my head as I suffer from anxiety and depression. I am now being referred to St Thomas's and a haematologist. Quite frankly I don't know if I'm scared or relieved. Does anyone know of a support group in Romford? thanks for reading x

4 Replies

Hi and welcome to our group

Well, it is better to be diagnosed that to be told there is nothing wrong, even though you are having symptoms. It seems common that neurologists are very sceptical about APS.

You seem to be being looked after well.

Good luck and let us know how you get on.



As Dave says its really good that you have had a swift dx and are now being referred to St Thomas. Many of us have had to wait years to get that far and fight to get referred so I do think that although its not nice to have anything wrong with you its much better to know what it is and be sent to a specialist unit with Doctors that understand the disease.

Your reaction is pretty typical and it will take time to settle down with the dx. I had a stroke in Jan 2011 and was dx in July of the same year. Now 2 years on Im just getting to grips with things as it does take time.

My advice to you would be to join HSF as they have lots of info that will be helpful for you. Look at the website which you can access by going to the top of the page and clicking on the HSF logo and then clicking on the link. You will also find lots of info on the site about the condition.

If you cany find a local support group please feel free to ask as many questions as you like on here as we will support you as much as we can.

And please do keep us updated as to how you are getting along. :-)


Hi there and welcome, and you have landed in the right place, some on here have spent years suffering ghastly symptoms and on top ghastly medical attitudes due to lack of diagnosis, so sad to hear yet again about neurologist attitudes, some are ok of course, but this is a common theme fed back on here! We can answer all your questions, and there is great support on here, to not be diagnosed would leave you feeling worse. Things should improve an awful lot for you now. Please keep us informed along the way. Mary F x


Hi & welcome to a very friendly & understanding site.

I am sorry you have been diagnosed with APS, but glad it was found early enough & that you have already been refered to St. Thomas.

Most of us were told it was all in our heads in the beginning!! soooo frustrating!

In the beginning this will all seem so overwhelming & you keep asking the question 'why me?!' but please understand we are all here in similar boats & will try to answer questions you have, take care Sue x


You may also like...