Hello I have Hughes Syndrome!

I found out around 5 years ago that I had Hughes Syndrome, this was due to me reading a article in a magazine and realising i had it.

Ten years ago i had a still born son at 6 months, I got pregnant near enough right away and my son was born 3 months premature and only lived 3 weeks. This was due to the Hughes Syndrome which the hospital didn't really know about back then ( so i was told)

Anyway im 30 now and have one gave up smoking for the past 9 days ( cold turkey) and am hoping this will help my Hughes Syndrome as I am thinking its time soon for a baby!

Found this community through the smoke free one and hopefully speak to some people that have the same thing as me and can give me some tips on how to make it better.

Bye for now.

Kate

32 Replies

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  • Hello there Kate

    Firstly welcome, and the next thing, I am so sorry that you went through such a horrible experience, this mirrors an awful lot of experiences on here. Lots of friendship, advise and support on here. Also the best of luck and well done with giving up smoking, I am sure you will succeed. You will probably find wherever you are located that you will find others on here, not too greographically far away from you. Nice you have joined us. Mary F x

  • Thanks Mary.... be good to speak with people who know what its like to have it ! :)

  • Hi the kate, and welcome. There are so many wonderfully supportive people on this site, and I am some will have suffered similar experiences to yourself. I am so so sorry to hear of your experience with losing your son, heartfelt wishes go to you. I gave up smoking Jan 2011 because I felt so awful, then became ill, and was diagnosed last November. It will help you not smoking I am sure, and also with your preparation for a baby. Be sure to speak with your doctors about your plans, so they can ensure you get the very best of care.

    Sending warm smiles

    Lesley

    :)

  • Thanks Lesley well it was two sons not one....

    Im not sad any more i think that everything happens for a reason and i am just preparing myself for the future...

    One of the main reasons i have gave up smoking.

    Hoping to learn more about the e condition i have too, as some of the websites confuse me lol

  • hi Kate, so sorry for your pain & lose.

    I hope you get some answers for the questions you ask.

    I'm glad you found us, well done for stop smiking too!

    hugs Sue x

  • Thanks Sue xxxxx

  • lol.....I ment smoking not smiking!!!

    I tell you I've been talking nonsense all day! I'm glad you understood me :) hugs xx

  • CAN I STOP SMIKING TO,I LOVE YOUR EFFORTS. YOU OUR GAL

  • I was just ging to send you a message as I've not heard from you for a bit :)

  • its ok yeah i got it lol x

  • ha :) thought you might!!! x

  • Hi Kate

    welcome and glad you found us. So sorry to hear of the loss of your babies. I understand how much it hurts.

    Congratulations on stopping smoking hon. :-) :-)

    Glad you got your diagnosis, though sorry you got Hughes. Best source of info is the Hughes foundation website on hughes-syndrome.org.

    With correct treatments such as aspirin and heparin lots of Hughes ladies have successful pregnancies.

    I notice from your location you live in London, have you been to St thomas's? They have a specialist unit for Hughes etc.

    I hope you find the help, info and support you need hon, we all here and will help if we can.

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

  • hi kate, i suffered a stillbirth at 6mths, and before then multiple missed misscarriages, i wasnt tested for aps till 5 years after my daughter died, she would be 10 this month, i was started on 150 aspirn and 40ml clexane and now have 3 very healthy boys, i wish u all the luck in trying again and well done for quitting smoking xxxx

  • Hi Kate,

    Very sorry to hear your story.

    Pleased you have joined us on here, we give each other support and share information.

    Well done with the smoking keep up the good work xx

  • Thanks Sue,

    Im on my tenth day today! :)

  • Hi Claire,

    Sorry to hear what you went through I can actually say i know how you feel. Great news on your sons. Yes mine would have been 10 and 9 by now.......

    Well hope fully soon i may have some good news by the end of the year.

    Oh Claire when you did fall pregnant was you referred to a special department?

  • Hi Sheena ,

    No i was referred to Kings Collage for the test where i got diagnosed.

    But good to know St Thomas's have a department now. When i was told i had it it was around6 or 7 years ago and the doctor said how rare it was so good to see they have there own department now :)

  • Hi Kate,

    I gave up smoking 30 years ago when I contracted pneumonia. Have you tried "invisible cigarettes?" That's when you go through all the movements of smoking -- opening the carton, tamping it down, lighting, puffing, etc -- without actually touching a cigarette. Just your hands in the air. This helped me tremendously. You really can fool your brain into thinking you're getting your nicotine fix when you're really just -- literally -- going through the motions.

    Good luck. If can be done.

  • Thanks Gina for the advice,

    I be honest with you i have not needed anything but will power.. and its surprisenley working...

    Im on my 11th day so far! :)

    I think that if i do get cravings then i will try your tip.

    Thanks again x

    Kate

  • My first baby surrived at 1 lb 5 ounces. He has disabilities but is a joy. Spencer went through so much medical garbage. I didn't want to have another baby that would have to go through so much pain to survive. I did not pursue the medical interventions that could be done for a 2nd pregnancy. My Rheumy would have followed me through a 2nd pregnancy. We decided to adopt our 2nd son from Korea. He an I bonded immediately. You can find a way to have a baby in your life. Just don't give up and let APS define your life.

    Jean

  • I wish you all the luck in the world, I always say to anyone re pregnancy start on the high dose 5mg folic acid as soon as you can before even trying - I had many problems but i saw a huge difference in my last pregnancy with it, anyone who is at risk of placenta problems should take it and it costs very litle, i started aspirin before pregnancy and heparin injections as soon as pregnant, I had regular growth scans and doppler scans and cervical length scans and as soon as any problem arised and they were a good weight - straight out!! I was never left to go full term x

  • i was treated by the consulatant on ante natal ward, he had a good knowledge of aps, i was scanned every 34 wks from 8wks and if baby hadnt. appered by 38wks then i would be induced, he was very good at looking after us and would heck blood supply to baby reg, i really wish u luck. and im hppy to talk if need too xx

  • Hi I'm so sorry to hear of your pain as I also had two miscarriages.

    I was diagnosed with aps when I was pregnant at 6 months with my son who is now a very healthy 11 year old. I think the key here is finding an understanding gp and clinic. I wish you all the luck in the world if you decide to try again. Debbie

  • Hi Kate glad you are concentrating on the future however sad the past is you can't change it but hopefully with the correct care the doctors can learn from your previous sad losses... I had similar loss at 20 weeks baby just died but then I had to carry it around for 2 weeks until they did a d&c but they would not do that thank goodness these days I wish I saw my baby... but I went on to have my beautiful talented daughter at 30 weeks I was on steriods & blood thinners due to clots on the brain with pregnancy was dx after further clots on the brain after Rachel was born then got the dx of hughes. I count myself lucky as this was in 1990 I was then sterilised at 25 to prevent further pregnancies as could have died...but I was not going anywhere :-) still got lots of living to do...

    Well done re giving up smoking excellent decision & you sound a strong person so am sure you will have happy news soon lots of love Kathy xxx:-) :-)

  • Thanks everyone for all your comments, experiences and advice, I am taking it all on aboard and as sad as it was we all went through i strangely feel a sense of weight lifted off my shoulder that im not weird and things that have happened to me aren't rare.. as i did alot around my friends and family having children so easily and pitying me for what happened, which i know they didnt do that in a bad way but i knew all the same.

    I have my Doctors tomorrow and he is a new one so lets see if his good or not :)

    Pretty sure he will be.

    Thanks again for everyone that has commented xxxx

  • hay kitty kat I have Hughes syndrome iv had problem after problem I had a stroke then lost my son who was 14 months old so I know how hard it is to lose a child so I am sorry to hear bout that I have loads health complaints and my family always just assumed I was after attention or something but it wasn't I was genuine do you find you have a lot of different health complaints x

  • Hi kezebabe

    I think we all felt family n friends thinking we got nothing wrong, or attention seeking, horrid that we have to go through that as well as being ill.

    Lots of health problems here too hon. Some of us have other autoimmune conditions too, is hard to know what causing what.

    I hope you feeling ok today.

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

  • Hey,

    Thank goodness you realised you have Hughes. Ive recently had a Hughes baby- she is 10weeks old now and worth every bruise and injection! Good Luck :) xxx

  • Hi Rebecca

    so glad you n baby doing ok hon.

    Big but gentle hugs love sheena xxxxxx :-) :-) :-)

  • Hi everyone thanks again for your comments.

    I am being referred up to kings college regarding preparing for when i get pregnant

    Happy to say i have a lovely doctor at last.

  • Hi excellent news kitty, so pleased you found a good doc.

    Keep in touch and let us know how you getting on hon.

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

  • Hi there,

    I too lost three babies but also had three live births. Now a grandma and even a great grandma. How old is this girl. Regarding stopping smoking, have you read Alan Carr's book 'The Easy Way to Stop Smoking'. No scare stories just a really good book, telling you what you already know and then a bit more. He is fantastic. Much Love Mary H xxx

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