Sticky Blood-Hughes Syndrome Support

dla advice too

I have been clinically diagnosed having 'probable' aps and anticardiolipin antibodies have shown up in pregnancy but dissapeared after pregnancy, which is delaying a label of aps for certain - my GP knows i have it and so do i. I had a stroke which has left me partially blind, at 30 years old, and only after contcting the RNIB have they agreed to help me fill out forms and find out what i may be entitled to - but i dont know where to go to find out what help im entitled to from the APS side of things. Ive lost my driving licence and bump around a lot and get confused and memory problems and extreme tiredness but does anyone know if your expected to work with all the symptoms or get any sort of allowances? Even a bus pass to help me get around would help - or taxis to my many hospital appointments! I know every situation is different and nothing is certain so i wont hold anyne to it!! I am new to this sight and finally there is a bit of support through it all - for such a long time your mde to feel like a hypochondriac because these auto immune things are little rips and just hide!Thankfully my dr is great and is on side - but ive been through the system so many times and got nowhere - even a stroke was missed three times,they even gave me iron tablts because my eyesight was bad while in hospital miscarrying with known anticardiolipin antibodies, thanks

10 Replies

Hello Emmaj I don't have answers to any of your questions but what I do know is that you in the right place to get them. You have had a rough ride and I want to say hi and I can't wait to get to know you xxxx


thank you!


Hi Emma,

Welcome and very glad to meet you. I may not be able to answer all your questions, but I know there are others only too willing to help.

With regards Dla, it doesn`t matter to them what the illness is called, it is how it affects your day to day life, The local Citizens advice bureau and local councils Welfare Rights should be able to advise you. When filling in forms it is always your worse days and what you cannot do. I know it`s bad but thats how it is.

Glad you have a good GP, he can help when they write to him as long as he knows how it affects you as well. He may be able to help with getting someone to come round and assess your needs, with the eye sight problems.

I hope some of this helps.

Take care, gentle hugs, Jessielou xxxx:-) :-) :-)


thank you x


Hi Emma

I hope I can help. I have just had a stroke and so just been through all of this.I know its not easy. When I came out of Hospital after three weeks I was just dumped. My husband had to call five times before anyone came round and then they refused to give me a £27 bath stool so I could shower! It too affected my sight and balance although thankfully my sight has improved.

What you may not be aware of is that every local authority has been assigned a local stroke co-ordinator whose job it is to make sure you are getting the care you need and can communicate between the different agencies. I eventually got that information and my co-ordinator Alex was great. You need to call your local council and ask them who your stroke co-ordinator is and for their number.

Bus Pass again would be your local council. If you live in any of the London Boroughs there is a Taxi card scheme. I can give you details if you want.

As far as the DLA is concerned you answer the questions based on your ability to do the things concerned. So for instance if it is a mobility question about walking you would say: "I cannot walk more than 10 m because I have problems with my balance caused by my stroke. I also have sight problems also caused by the stroke which means I cannot see further than ? I suffer extreme pain which also makes it difficult to walk further than this distance. I need somebody to be with me in case I fall or to help me if I do so etc etc. Recently when I went shopping I tripped on a curb and fell and found it difficult to get up and continue as i had no one with me. I was very upset and a friend had to come and get me".

As you can see you are not mentioning your APS as such but it is what caused your stroke and you would list that in the medical conditions section. There is a sort of rule when filling out these forms - 1. tell them you cant do something, 2. tell them the reasons why, listing the conditions that cause this, 3 Give an example of when it affects you. Most importantly never worry about how much you write on the forms or repeat yourself adding paper if you have to.

If you need help with your DLA PM me.



thank you ever so much!


Hi Emma,

I am really sorry to hear you are having all theses issues, it seam Lynn has given you some sound advice on the DLA. I would recommend that you get in touch with a social worker or Occupational therapist these people should be able to help you with equipment support you need around the home. Regarding other support you may be entittled to a number of benifits depending on your situtation so either you can rasie the issue with the RNIB or Jobcentre Plus you can also phone the benifits Agency and they should be able to givce you advices and also help you fill in a form to see what you are entittled to.

If you are really stuck all local councils have a disability support service within them see the link below for your area

Also in each county there is a disability information service see the link below for your local one these all provide free support on the phone or can refer you to the local support in your area.

I hope this helps



thanks ever so much x


How you getting on emma?


im ok thanks for asking - unsure whether ive had a tia and very forgetfull and foggy and stumbling a lo this week - and two ill young kiddies but hey ho! The first step was to be registered partially sighted which im just waiting for confirmation before i go any further - then the lupus clinic confirmation - once i have all the info then i can proceed - its a bit less daunting now ive found this site,thanks again and ill keep you posted!


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