Sticky Blood-Hughes Syndrome Support
8,159 members8,382 posts

Hi everyone, im new

Found this website today, and had to join as I havnt been able to find any other kind of support anywhere, anyway i'm from the north east of england and was diagnosed with aps last year after going through multiple miscarriages, the hospital didnt give me any info on aps just gave me a letter confirming that is what I have. I suffer from memory loss the most awful headaches and ive just found a lump in the front of my throat so im stressed to bits had to wait a week to see a doctor who I am seeing tomorrow hope its nothing to worry about. Anyway thats enough about me, its nice to finally find somewhere, where im not going through this alone.x

11 Replies

Hi welcome to this site. Everyone is so helpful on here, and we all cheer each other up on a bad day, so you've hit the right place. Really sorry to hear about the miscarriages you've gone through, its not easy, but now you know what's caused them you are better informed when trying again. Many of the ladies on here have gone on to have successful pregnanciessonthere is hope. I think it takes a lot of careful handling in treating aps to get a balance of life versus existence, and prompt intervention can be crucial at times. It's also essential to have a supportive gp, but more so their gatekeepers...the receptionist. You'll find lots of useful help and advice on the main website too, so give it a try you never know, and don't forget stress makes it worse as well. If that lump in your throat gets worse you need to get it seen to sooner, as a matter of urgency.

Take care Lynxy x


Hi Jessie! I'm pretty new too and the people around here have been amazing! They've really helped me through a rough patch!

Please update us after your appointment. I hope everything goes well!


Hi Jessie and a warm welcome from me too. Im glad that you have landed on here as Im sure you will find not only useful info but necessary support too. Im so sorry that you have had a tough time up to diagnosis. Hopefully now that you know the cause of your miscarriages things will be easier next time.

As has been mentioned, you may find browsing the HSF website will help answer many questions and also there is a lot of info on here from previous questions already asked. You can either use the search bar at the top right of the page (type in a word or phrase) and it will bring up all the threads with that word or subject in it. Also you can use the Tags on the top red line and look for the word of the subject you want to research.

Just to mention the lump on your throat - have you had your thyroid checked? APS (Hughes Syndrome) often comes along with Thyroid and Sjogrens Syndrome as a Trio so its a good idea to check if these are something that are affecting you too.

Here is the link to the HSF website and please dont hesitate to ask any questions you may have. x


Hi Jessie I am also new , my name is Beth or as I also go by Windsor Girl. I was Diagnosed 3 years ago for my 50th birthday. At first I thought I had a curse ,but now I feel special. I can honestly say I have never met anyone else with Hughes. It is very nice to meet you, pardon my rudeness. I am also new with a computer. It takes me about an hour to type this little not with with one finger.. Just kidding.. But ya I am a computer Newbie... I hope no one is offending my sense of humor..Thank God for spell check I see if I misspell a word they correct it..amen cause I am a poor speller. It was nice meeting you.


Hi Beth - Lovely to meet you too. Perhaps you too would like to read what I wrote above for Jessie and if you have any further questions feel free to post your own question and we will be happy to try and answer. x


Hi Jessie and a warm welcome from me too.

Best wishes.

Dave x


Hi Jessica

Welcome to the group, I've had APS for just under 4 years and found this group by chance about a year ago. Everyone is really supportive and I've learned a lot from everyone.

best wishes



Hi Jessie

I am sorry to hear of the trauma you have gone through.

Welcome to this site, nice to virtually meet you. I am diagnosed with APS and I am from the north east but now live in Leeds. We do come up north every week so just wanted to let you know that there are people living close to you if that helps. Tis site has been an excellent source of help, advice and information for me. I am luck in that I have a wonderful medical team around me, my GP and Rheumatologist are Neurologist are all fully aware of APS and they even communicate with each other to help me.

Please feel free to let me know if I can help you. In any way or even if you would like go meet up sometime.

Take care and welcome again. Dawn x


Hi there, and a big welcome to you, you have landed in the right place for information and support, and quite a few do live in your area of the country. Regarding lump in neck, thyroid conditions often come as part of a trio with this disease as does Sjogrens, it is well documented that many have these three together including myself. Please stay on this site for all your Hughes Syndrome needs and on this platform you may also wish to join Thyroid UK, who are excellent for supporting thryoid issues, quite a few of us are on there for that reason and vice versa! Please do ask us any questions and we will do our best to help you with finer detail etc. Mary F x


Hi! I'm new too - joined a couple of weeks ago. I was diagnosed about 4 years ago - almost 10 years of multiple miscarages prompted mine too - but have had symptoms for at least 20 years. I got no support- just phone a doctor for a blood check if you get pregnant. I know nothing about APS, and was told it was nothing to worry about - but I have worried.

over the last few weeks, reading other peoples stories, I've become much calmer, and picked up lots of tips dealing with stuff too, and found as I've become informed, I feel so much better. All the people here are so supportive.

Good luck with those tests


Hi Everyone, Its lovely to hear from you, yes that is a very good idea regarding the lump in my throat having my tyroid checked. We have decided to wait to have children until I get used to having APS lets face it, it doesnt go away just need lots more information my past 8 misscarriages have happened at 5-6 wks and the dr doesnt give heparin until 6 wks which I believe if I could be perscribed from the time I recieved a positive result the outcome might be a happy one. Anyway I am very lucky to have 2 healthy children already before I was diagnosed with APS with my ex husband and now i'm divorced met a fantastic,supportive man who I have been with for 3 years I wanted to have my last child, waiting a little bit longer wont do me any harm.xx


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