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Sticky Blood-Hughes Syndrome Support
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dont no where to start

hi im new to this so not sure whats going to happen. ive had 14 miscarriages in total and got told yeasterday i might have hughes, can anyone help me out im so confused and dont no whays gonna happen to me next

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Hi Louise

so pleased to see you post. So sorry you have had these miscarriages. There will be many on this site who can help you. I've been on Hughes site since 2007, and get great help for my cardiovascular events because of Hughes. Let us know where you live and you might have groups/people close to you. I'm in north Queensland I had to wait till 2010 to be d/x. All the best

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Hi Louise and welcome! I am so sorry for your losses. Losing a baby is something I wish no mother had to experience. Sadly many of us have a similar story.

Many women only have Hughes during pregnancy and may not have any other symptoms. So during pregnancy we are commonly treated with a low dose aspirin and some form of heparin to keep our blood thinner. This treatment is commonly stopped just prior to birth (often induced so that timing of the withdrawal of the medications can be managed) and then started again within 12 hours of delivery and continued for at least 6 weeks after the birth.

After that many women stay on a low dose aspirin daily as a precautionary measure.

If you have other symptoms develop there are other medications that can be used to help in some cases.

Hughes is a very complex disorder with many symptoms. You may get some, all or none.

It can be scary to read some of the stories here but you may never have those symptoms so try not to panic.

If you click on my name it should lead you to more information on me and a link to the Hughes Syndrome Pregnancy (and Miscarriage) Support Group.

Feel free to ask any questions and someone is sure to have some suggestions or shared experiences.

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Hi there and a big welcome to you. Your tale is a very familiar one to many on here. I am sorry that you had had a hard path to beginning your diagnosis. Firstly, has your GP flagged this up, or is it from reading? If you GP is on side, then they maybe keen to refer you to St Thomas' Hospital, as at times this can help fine tune your local hospital and GP care. Your GP will do various tests and also take your medical history, including if they have the knowledge asking you about migraine history alongside other markers. I hope we can support you on here and fully try and answer all your questions. Believe it or not, half the battle is getting the diagnosis, once this has been achieved, things can get significantly better for you, including care during pregnancy. All the best Mary F x

ps one or two of us on here, have gone privately to get the help, if not forthcoming in the NHS, I do a mixture of both, I attend St Thomas' also my local hospital, and also see Professor Hughes privately at London Bridge.

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hi yeah my gp thinks i have it she is sending me for blood tests ect to find out. just wish this was found out years ago when it all started

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Well I think you have a good GP if she has spotted it although as you say it would have been good if it had been noticed before. But hey you cant look back try and look forward, now that they are on to it hopefully things can more forward in a positive way. x

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Hello Louise, Welcome to our group although Im sorry its under such sad circumstances.

We are a very friendly bunch and will offer you as much support as we can. Echo all that has been said above. You also might like to think about joining the Hughes Syndrome Foundation who can send you out lots of info . Their website also has lots of info which you may find helpful and a new more updated version is being launched later this year.

Big Hug x

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Hello Louise and welcome to the group.

Where are you from?

Best wishes.

Dave

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hi dave im from deal in kent

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Hi Louise

Welcome, glad you found us, really sorry to hear about your many losses, I understand the grief and pain hon, I had miscarriages too, I have been blessed with my three miracle children who managed to survive without treatment. I hope we can help you through your diagnosis and support you too.

Once diagnosed treatment is as said above, aspirin and heparin during pregnancy.

There are others on here who have succeeded and have their little ones.

Hopefully your gp will refer you to St Thomas's, where you should get help and treatment.

Hughes affects us in different ways, so don't be too scared by what you read on here.

We are a friendly bunch and will try and help if we can.

Take care gentle hugs love Sheena xxxxx :-) :-) :-)

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Hi Louise, I am sorry for all your losses.

Many on here can relate to what you have been through, we are all here to answer many questions you may.

Hopefully they are hurrying your tests through now, yes it should have been done before you had to go through all this.....we hear this a lot & all are trying to make the system work quicker & to raise awareness wherever we can.

If you are diagnosed with APS you will be given the correct medication & hopefully you will have a success story like many on here, I wish you luck & let us know how you get on with it all, I hope to hear more about you soon. xx

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hi i lost my first baby he was stillborn at 8 months can't imagine 14 i have aps and lupus anticoagulant and 5 years found out i have renal failure i have 2 children 1 boy age 21 and a girl age 18 back then aps was all new to drs i found a specialist took both babies about 4 weeks early took heparin injections and aspirin so sorry for your losses

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