I am very confused. My husband had a stroke at 32yrs and was later diagnosed with Hughes syndrome. In the 16yrs we have been together he has continually complained about problems with his vision, balance and head aches. He's been back and forth to the GPs over the years to be sent away saying its all in his head! The MRI he had showed he had older scaring from smaller mini strokes.

My confusion is due to the various specialists contradicting each other. We have been told this can be genetic and then also told its absolutely not.

We have 3 children and we want them tested if this is the case. Can anyone shed any light on this? Any info would be appreciated.

11 Replies

  • First of all you don't say if your husband is now under an APS/Hughes specialist, if not its crucial that he does so and quickly as at his age he deserves to get his condition under control. His symptoms are absolutely NOT in his head!

    Secondly it would be helpful to know where you are situated as that will help with out advise to you.

    And Finally the question on genetics. This has not as yet been proven although the thoughts and small trials that have been run are leading people to beleive that it can run in families, The question about getting children tested is open to debate and often left to parents discretion and if they are actually having symptoms or not.

    I would advise you to the Hughes Syndrome website where you will get lots of info. I would also look up Prof Hughes Blogs and also the Hughes Syndrome Patient Day transcripts or videos as this question is often asked and answered on those days.

    I do hope your husbands treatment improves soon - get him to be seen by somebody whose an expert in this condition!

  • We are in Wakefield, West Yorkshire, UK. His symptoms have calmed down now he's been diagnosed with APS and is on warfarin. My main concern comes from the fact he's been dismissed by our doctors for years. It wasn't until he had his stroke 18mths ago at the age of 32 they actually listened to him! He now sees a neurologist for his stroke and rheumatoid specialist for APS.

    We were given a leaflet on APS and told it can be genetic and our daughters risk multiple miscarriage along with strokes. Then another doctor tells us this is not the case We feel so lost with very little consistent information.

    If this is genetic we don't want our children to risk having a miscarriage or stroke simply because GPs are not familiar with it.

  • Hi there and welcome.

    As my colleague, APsnotFab has said, your husband absolutely needs to be under the care of an APS/Hughes consultant.

    Please have a look at our charity's website:

    and especially:

    From my own experience and those of others on here, many of his symptoms would benefit from having the correct medication, which may include anticoagulation and anti-platelet drugs.

    Please insist on him being referred to a specialist from the charity's list, see link above. Alternatively, he could self refer as a private patient to Prof Hughes or one of his team at: The London Lupus Centre, London Bridge Hospital, he does not need a GP referral to be seen there. Here is thee link to them:

    Good luck and please ensure that he is seen by the appropriate consultant and please let us know how you get on.

    Best wishes.


  • Is the rheumatologist not the right consultant then? thats the only blood doctor he's seen.


  • Hi Laura

    Most APS consultants are Rheumatologists. However, not all Rheumatologists are APS experienced, so it's important to get one who is and who will be proactive.


  • It is such a shame that your husband had to endure bad treatment and be ignored to the point that he had a stroke. I too had the same situation, was completely misdiagnosed by a Neurologist (who are not very helpful for APS) and then had a stroke.

    Its true that this condition does affect women disproportionately and is mainly diagnosed in ladies when they get pregnant or after suffering many miscarriages. For that reason you may have been given the advise to get your daughters tested. My own daughter has had 5 miscarriages however despite us suspecting APS she has had no symptoms and has been tested and seen both Prof Khamashta and Prof Hughes (both guru's in this condition) and both declared she does not have it.

    Please do not get yourself in a state about this. I don't know the ages of your daughters but there is no reason to believe they will have the condition and even if they did, treatment during pregnancy has come a long way now. As for having a stroke...well if they are treated then that should not happen either. Its very irresponsible to be telling patients such doom and gloom things like that.

    Please take a deep breath, arrange to see a APS specialist, get your other half sorted out first and then if you need to think about your daughters you will be in a much better place to make that decision.

    We are here for support if you need us.

  • Hi Laura,

    I wonder at what therapeutic level of INR your husband is regarding his warfarin?

    We have learnt here that we feel best if our INR is over an INR of 3.5. We have very thick (sticky) blood and we do not bleed but clot from this illness.

    So very few doctors understand this which is the most important issue as the blood needs to be well anticoagulated and also kept within the therapeutic range to avoid further clots and embolies. I have had a lot of microembolies and am on Warfarin with an INR of 3.2 - 3.8 at present and I also selftest since 3 years.

    Read "Sticky Blood Explained" by Kay Thackray. She has the illness herself and writes about the different symptoms of this illness. It is a very good book about how it is to live with APS. I have it in pocket. Good for relatives also to understand APS.

    My two girls are around 35 and wanted to be tested for APS. Important if you have Girls, is that they do not use the "pill". APS is not said to be genetic but you can inherit the tendency to get it. (Hope you understand as I am Swedish)

    I had also problems with balance, vision (lost my vision in one eye for some minutes), Vertigo (had to crawl on the floor or hold on to a tree not to fall and everything was spinning to the left, doublevision, felt the heartbeat in my eye.

    I had very high bloodpressure before I started warfarin and now I have got Pulmonary Hypertension and leaking heartvalves. So tell him to cheque his bloodpressure! These things have been caused by APS.

    Best wishes and give my regards to your husband!

    Kerstin in Stockholm

  • HI and welcome you have had some good advice already, it is crucial you see one of recommended specialists off the list, and also that you and he familiarize yourselves with the charity website, it contains lots of up to date information and also various books for sale also, please use this forum as much as you like, and be aware that having the right specialist will not only help you but also your GP surgery who clearly will be helped by more fine tuned expert guidance. MaryF

  • You might find it useful to look at the video from the patients day.

  • I was told it is likely to be genetic in my case as my Dad has it. However my brother has been tested and he was clear, I have another brother who hasn't been tested. They took a long time to diagnose my Dad and in my case it was by accident during IVF treatment. Good luck with getting the treatment he needs. Dependant on your GP you do need to be persistent to get refereed properly to an aps specialist.

  • I've been to GPs today and the children are getting a referral to a rheumatologist. 😃

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