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hughes syndrome - medical card?

  • 15-06-2014 12:29pm
    #1
    mistress_gi
    Registered Users, Registered Users 2 Posts: 964 ✭✭✭


    Hi everyone! I am recovering from a pretty serious clotting incident as we speak and it is almost certain that I have Hughes syndrome (or antiphospholipid syndrome). So my body has randomly decided to start making antibodies that clot my blood in a serious way.
    I had a clot in my pulmonary vein (pretty much all the way clotted) and another in my jugular (from the chest to the back of the neck). I've not had a great time of late!!!
    Confirmation of this diagnosis will be in august (due to the nature of the diagnosis a 3 month window is needed before a confirmation can be obtained).
    The result of this is I will be dependent on some form of anticoagulation treatment for the rest of my life (I'm 34 now).
    I currently have a medical card but it expires in august and I am yet to receive a renewal form, I have been reading about the delays in the process of renewals and I am concerned that I won't be able to afford all the meds, tests etc, I am also due to start a new job in august which may make me ineligible to continue in the medical card scheme.
    Another issue is that I may clot at any time and this could land me in hospital at any time and even though I will have a new job times are hard and I am very very stressed about this.
    I know some conditions automatically make patients eligible for a medical card but I am not sure how mine fits into the grand scheme of things.
    Any other sufferers out there that can share experiences and/or shed some light on things?
    Sorry if I am not so clear but today is not a great day :)
    Thanks for reading!


Comments

  • #2
    locum-motion
    Registered Users, Registered Users 2 Posts: 5,143 ✭✭✭locum-motion


    mistress_gi wrote: »
    ...I currently have a medical card but it expires in august and I am yet to receive a renewal form...

    You should receive your renewal form fairly soon. Just make damn sure that the HSE have your current address. Go to this page
    https://www.sspcrs.ie/portal/checker/pub/check
    and type in your medical card number. It will then tell you when your card expires, and more importantly in your case, whether any review letters have been sent yet.
    mistress_gi wrote: »
    ...I know some conditions automatically make patients eligible for a medical card but I am not sure how mine fits into the grand scheme of things...

    Sorry, but you're mistaken. There is currently no list of conditions that automatically entitle you to a card. It is means tested, but a 'discretionary' card might be awarded to someone whose means is above the threshold but who would suffer 'undue hardship' if their application was denied. If you've been paying attention to the news in recent weeks, you will have been aware of the controversy surrounding this system and how it is completely unfit for purpose. It was announced last week that they're going to look at the possibility of setting up such a list, but it doesn't exist yet.

    What does exist, though, is the Long Term Illness scheme. This is a list of about 15-16 diseases that entitle you to get your meds for that illness for free. Hughes' Syndrome is not one of them.


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