hughes syndrome

hi all first blog my daughter has been told she has HS and is really finding it hard to cope has lots of chest pain and very tired she is finding it hard to go to work and is really worried about losing her job has anyone else had the same probs would be grateful if anyone knows if she would beable to register as disabled she is really worried thank you

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  • Hi, I am sorry to hear about your daughter having Hughes Syndrome, it is nice to know you are on here for her :)

    Perhaps she too would like to come on & speak with us? as we all have felt so much benefit from talking to others :) you are more than welcome too, as I know it isn't easy for family members & you too want to know as much about it & give her the best support & be there too.

    Firstly...has she been put on Warfarin?

    What episodes (symptoms) has she had up to now?

    How old is she?

    What type of work is she in?

    I myself claim DLA & had to give my job up as I felt 'unreliable' as I never know if I am going to have a good day or a bad day :( I didn't think I'd get it....but I did! On a good day you cant tell me apart from anyone else....except a limp or wobble, on a bad day I may use a stick, cant get out of bed, speach not good & in a lot of pain..........

    It is often the case with many that quite a few of us are either in or looking into working for our selves................but some are also still in work, some fully able...others struggling :(

    Unfortunetly I cannot give you a definate answer as we are all in a different degree with it.

    All I can advise you is that if she feels strongly that it is too much for her maybe try for it as they will give her forms to fill in then she will have a physical check up where they will evaluate her to see is she will qualify for DLA.

    It is worrying plus we dont want to give our jobs up.....maybe find out first if she could qualify before making that decision?

    I hope I may have helped........opefully someone else can shed a little help your way too, please keep asking your questions & we'll see what we can do, I hope you are ok & all the best for your daughter x

  • many thanks anna is 25 and has a pulmary enbolism get very very tired also very breathless when walking she has quite servre chest pain which can last for hours she works in retail whick can be very hard work she is on warfrain but her levels go up and down ty jean

  • Hello and welcome, to add to all of the above, there may be other things they can do for her fatigue, for instance some people do very well on a drug called 'plaquenil', I did not, but my own daughter does. Feel free to ask us loads of questions. Mary F x

  • hi ty for comments anna is in retail and the work can be very hard so ar she has severe chest pains which can last for hours and she has a pulmonary embolism and get very very tired walking makes her tired and breathless she is on warfrain and is having checks for her levels but they go up and down a lot anna is 25 and had open heart surury when she was 2 jean xx

  • many thanks to you both i will get anna to come on the site and talk to u all as i am sure it will help her ty jean xx

  • Yes unfortunetly fatigue is a biggy in Hughes :(

    Also because of her PE will add to this, I hope they are sorting this out for her? must be very painful....I myself havn't had one so can't comment much on that.

    yes I too did retail & found it very difficult as you are on your feet a lot plus lifting stock etc.

    We will also look forward to talking to her as well as you then :)

    Sue x

  • Hi Jean

    I would like to add my welcome to both you and Anna.

    Who is Anna being treated by for HS? Where do you live, are you in the UK or another country?

    Best wishes.

    Dave

  • hi people this is my mum asking for me i am on here hellooooo

    I live in the uk folkestone kent. I am treated by my local hospital at the moment and a hospital in london and canterbury.

    Work is very hard at the moment and i have to have a lot of time off. I am always tierd but ill get there.

    Thanks for all your comment

    Anna xx

  • Good on you, glad you have joined.. I have Hughes and so does my daughter, and combined with Lupus... and she is on plaquenil which has helped a lot with the fatigue! Keep on chatting on here, it will make things easier for you and your mum.. Best wishes Mary F x

  • Hi Anna :) nice to speak to you too.

    We are here to give you any help we can within our knowledge, we are not medics but we can help you with our own experiences.

    Which hospital in London? St. Thomas? most of us go there & find it the best one to go to.

    I understand how it can make you feel very tired :( I hope you sort something out for yourself which you feel is the best in the end hun, keep us posted & let us know if we can help you in any way xx

  • Hi no not St Thomas as yet as they are still doing lots of tests its the UCLH rosenheim building i think im going there because the heart hospital have sent me there. Ive also have open heart surgery at 2 years but thats ok now hopefully no more problems. i hope they sort me out soon im really fed up now. xx

  • It can feel very long winded whilst everything is being tested in the beginning.

    That must have been a worry for your Mum having that done at 2 yrs old :(

    I hope you have no more problems that side of it.

    You can feel very fatigued with Hughes, many of us do.....sometimes I even struggle to get up before 12pm!!!! I try to but then my eyes shut again..............I know I have some other issues that is causing me pain at the moment so this is wearing me out too.............but most of understand the tiredness side of Hughes, you must remember you are not alone.

    Keep as possitive with this even tho' I know it can be hard, we are here for you to talk to & it sounds like you have a great supportive Mom :) xx

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