In need of guidance

My partner aged 24 has just recently been diagnosed with Antiphospholipid Syndrome after years of testing. We are both still adjusting to the news and change of lifestyles one of the main issues we have come across is the major cut back in working hours which has created financial difficulty, now even though my partner is very much determined to work and lead a regular life there are some days were the aches and pains are too much for him to work.

So my question being, is there any financial help available to the suffers of Hughes Syndrome who still work but are only physically able to endure part time hours?

5 Replies

  • Hi there, a good starting point would be to talk it through with your GP and see what they suggest. MaryF

  • With this condition it is all about the right level of anticoagulation, which can make the world of difference to pain and fatigue levels. There are also other drugs on top which can add to reduction of both and help stabilise - I still get bad days so all is not rosey but I can hold down a full time job. What he needs is a rheumatologist who is an expert in the condition who can work with him to get it under control as much as possible - so as Mary says he needs to start with the BP and get a referral. The Hughes Syndrome website has a list of consultants across the UK if you are UK based so you can ask for a referral to a specific person.

  • I agree on that! Good suggestion.


  • Hi there and welcome.

    I agree with what has been said by Elaine and my two Admin colleagues.

    It is all about being adequately anticoagulated and thereby managing symptoms to an acceptable level.

    I still work full time running my surveying practice.

    Best wishes.


  • Three years ago I would have been saying what you are and I also took medical retirement even before my stroke because of the build up of symptoms. For the past year I have been doing an almost full time job and I am in my 60's - and that is after having and still recovering from a Stroke.

    As the others have said the key is getting the right medication, the right Dr's that you can work with and understanding the condition and knowing what to do when a flare starts so you can limit its effects.

    This condition is manageable. Its also important to have good communications with your employer, to be frank with yourself and them about capability and with luck you should be able to do well.

    Please look on the bright side. This condition is not all doom and gloom. Im sure its been a big shock to you but once you settle in to it you will learn to cope. We are always here to help support you. :-)

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