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Sticky Blood-Hughes Syndrome Support
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Hi i'm new to this so you will have to bear with me i was diagnosed with APS 13years was rushed into hospital with suspected meningitis than after doing several test they found i had APS was told back then that was a form of lupus was put on warfin i get the giddiness lost my eyesight for 6 months the rash on my arms the ache in my knees/legs and tiredness and headache had a stillborn and too miscarriages but now have a 7years old son :) was also but on incapacity benefit 13years ago and have been on this until 2010 when they decided to clamp down on it and just wondered how every one else mangers i went to my doctors and said i think i could manege a few hours work but not full time is there anything they could do to help me at this time thought i had lupus as well and the response i got was i do not have Lupus i have APS and the only way it affects me is through recurring miscarriage and there is nothing they could do to help went to the job center for help and nothing there either so i have gone and got a job and are working 20hours a week and it is killing me just don't know where else to turn for some advise and help thanks

14 Replies

apply 4 DLA and get CAB 2 help u fill out the forms ;0)


Hi i did apply 4 DLA and CAB filled the form out for me last year and was refused feel like i am banging my head against a brick wall :(


sorry 2 hear that but I'd still reapply as base it on u're worst days, putting in every little thing no matter how trivial it seems. Do u have a DIAC near u? (Disability & Information Advice Service) They r bloody experts at doing those forms ;0)


thanks no i dont think we do have a DIAC but will ask around thanks x


I would contact your local council and ask if there is anyone there who helps fill out forms - I did this and was awarded it indefinately. It also helps if you have the backup from your doctor on how bad your day to day struggles are - if you suffer from giddiness and are at risk of strokes then there also comes down to the fact that you are too risky for an employer to employ you. I really hope you get some help. x


Thanks it is worth a try as carnt carry on like this although i went to my doctors twice and was told there is nothing they can do and there is no reason why im not fit for work i get the impression they no nothing about APS i also so have a long list of other illness on my doc records to its just a joke :(


First of all welcome to our group and we hope we can help and be of some support to you.

It seems to me that once again people are forgetting that it is not the condition itself but the AFFECTS of the condition that you should be concerned about. So if you have APS and have no symptoms then obviously you can work if you wish but if you have APS and have symptoms that make it difficult then obviously thats a different matter.

Your GP seems to be forgetting this and therefore if they dont know how to treat this condition adequately they should be referring you to a specialist who can.

You dont mention what symptoms you have now that make working difficult or what part of the country you come from. If you have rash's I would be suspicious about the dx not including Lupus and you sound as if Plaquenil would help if it was prescribed to you.

If you can let us know where you are we could suggest the best place for you to be referred to which also may help with you getting the correct dx.

If you are going to put in a claim for DLA you need to do it quickly before its stopped in favour of PIP which starts in April.

If your GP is not helpful with APS as well as your other conditions, perhaps its time to look around for another GP.

Let us know how you are getting on.


Hi thanks for the reply i was under a specialist form the when i was diagnosed right up to 7years ago as soon as i had my son im no longer under him and just the doctors and yes i am looking in to changing my doctors i am in Tuxford nottinghamshire i am quite happy to go to work for a few hours a week but im doing 20 hours a week to help pay the bills and it is just to much for me the symptoms of APS that i have are giddiness extreme tiredness pains in legs/knees rash on my arms i can not walk for long without stopping eyesight dizziness i also suffer with panic attacks just feel that i have no where to turn to get some help bills need to be paid i struggling to work the hours im doing and no one wants to know


Im not sure which NHS hospital that is close to you has an APS specialist but if you were happy with the specialist you were under before you could ask to be referred back to him. Alternatively the best place to go would be St Thomas in London but some PCT's will not allow referrals out of the area, but there is no harm in asking. I really think you should be under a specialist. Others may come on and suggest someone close to you.

In the meantime get the DLA application and see if CAB will help you fill it out. The problem you are going to have is that you will need a supporting letter from a GP or specialist to stand any chance of a successful application, so you are in a bit of a catch 22 at the moment.

If your GP is in a group practise is there another Doctor there that may be more helpful to see? Look on the surgeries website at the Doctors profiles. If not I would change GP's quickly but do some research on the best one so you are not jumping from the frying pan into the fire.

Oh and if you are really bad and you decide to just go to A&E when you have a bad rash and your pains are really bad etc etc....your GP gets charged for that (shame)....you will get seen by another Dr who with a bit of luck will dx the Lupus /APS and refer you to the correct Clinic and the GP will have to pay!! Might be a back door way of getting referred :-D

Good Luck.


thanks for that i did get CAB to fill in the DVLA form for me about 8months ago and it was refused it just seems that i was being treated for APS while i was trying to carry a child as soon as i had my baby 7 years ago it was congratulations and good bye your docs will take over from now not good it all this time i was under the impression that i have APS and Lupas only to be told by my doctor 12 months ago when i went for help because they stopped my incapasity that i i have APS and not Lupas and it dosent affect me in any way unless im pregnant was there words so yes i think my next step in to change my doctors and take it from there


Hi Am so sorry for your situation , I ajm a carer to a person with similar and even more disabled and am very worried for her as after getting "DLA for life" assesmjent last year , she has over the last year deteriorated sevely. Now outragiously she is now being persued to be reassesed. Its awafull the harrisment and people being totaly hartlessly told they are ok when they are plainly not.It a form of culling the sick and vulnerable!

I dont have all the answers but you mjight get somje help from my recently posted question and looking at the links.( if that doesnt work than put, Black Diamond Atos Campaign , into google search and try the links and read what comes up it mjay well help )

You mjight care to loook up mjy questrion on the huges site here. If you need please feel free to contact me and we all need to keep each other posted and by doing so get beter and confronting the unfortunate desdire to get rid of even the genuinly ill people..

Come back if cant find the post.etc. ( send mje a direct mjessage if need beI am on twitter Andrew. Tollett @CMAMT

So sorry and lets all pray we can all help you .

Berst Andrewthecarer

Together we are stronger alone we are frightened and weak!


I am sorry about your plight, you tell a very familiar tale on here, that we have heard before. We are currently in the middle of building a new data base of professionals with knowledge of the condition, I would suggest contacting Hughes Syndrome Foundation directly with your location and asking, if not you may have to get a referral to London if possible. Mary F x


Typically - and as I found out too (even at proffessor level) maternity led consultants are just that - and unfortunately they do not think outside the box and refer you on to somebody once you have delivered.. My first pg that I lost late on I was told simply anticardiolipin antibodies were found in my blood and with injections I would be absolutely fine - no problems/worries - and I went skipping out of the hospital thinking all would be fine - they didnt even tell me on the next pregnancy to inject for 6 weeks after - and that was a proffessor at a top womens hospital!!!! Needless to say with every pregnancy I got sicker and sicker - strokes/heamorrhage,partial sight loss etc etc. Im lucky and my GP is on side - you may not need DLA because you can walk so many feet blah blah blah - but the reason is clear - if you have giddiness you should NOT be alone in the house at all,and you are too risky for employers to employ - and as for APS its not just the debilitating day to day stuff to get through - its the what 'could' happen at any given time. I really hope you get referred somewhere xx


thankyou x


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