Sticky Blood-Hughes Syndrome Support
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antiphospholipid syndrome

My mom has been diagnosed with hughes syndrome and was told by her GP that i should get myself tested for it as its hereditary. What are the chances of either myself or my brother contracting it or what are the odds on us passing it on to our children.

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That's a great question and one I would also like an answer too!!!!!

I have heard some say it is and some say it isn't. I'm with steve2012!!!!!!!!!!!!!!!!!!!!!!

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Hi there and welcome, from what I understand there can be more of a tendency for it to occur in some families. It has in mine, but in others it has not. Here is a paper which has the sort of slant normally written, about inheritance patterns, in other words it is not totally clear cut, and more research will probably be done to identify pocket of the population where there is a stronger tendency. genome.gov/17516396 Mary F x

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Hi Steve

Speaking as a mum with two grown up kids, if my children were showing any symptoms of APS then I would of course encourage them to have the blood tests even though they could possibly end up being negative and yet still have APS!! If they have no symptoms then there is no point in my view in being tested but that just my opinion.

It has occurred in at least two generations in my family possibly three.

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I was told primary APS is not hereditary. I wouldn't have my kids tested, only if they had signs of the disease.

Good luck!

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Hi Steve

Welcome and glad you found us, sorry to hear your mum has Aps. The specialists seem to think its not hereditary, however it can occur in some families, quite a few of my family members have autoimmune conditions,

I have children and they will only have tests if they are showing symptoms. My son may be getting checked as he is.

Hope your mum ok!

Take care gentle hugs love Sheena xxxxx :-) :-) :-)

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I was concerned that my children should be tested but a colleague of mine who is a very well respected consultant physician tells me about 10% of the population have anti cardiolipin antibodies without even knowing and would not require anti coagulation until they had an event.

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Steve

I have primary APS and on one of my consultations with prof Hughes my son came with me and, as I was about to have blood taken, the Prof asked him if he would like to be tested at the same time; my son declined, but Prof was obviously suggesting that such a test was worth doing.

Best wishes.

Dave

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Hi I think it depends on the individual, I myself believe I started with it due to an operation.....as it is said it could be in all of us but just needs a trigger,I cannot really trace mine through my family with a possitive give away......others there seems to be a direct link in their families......so it's worth checking into if there are some worries but it isn't a possitive clear path really, all the best, keep us informed :)

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To my knowledge its only my mom who's got the condition as i dont think anybody else has got hughes syndrome. She also cant keep still she's constantly shaking she's been tested for MS and parkinsons & they've came bk as negative so whether its the strokes that she's had thats causing her to shake constantly.

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Hi Steve

Tremors/shakes may be related to the Hughes syndrome, Professor Hughes talked about this at recent patients forum in London. Its in the hughes foundation blog.

I have them at times, I know they worry my partner and my mum. They can be pretty distressing, I'm so glad that you're supporting your mum.

Hope all is ok today.

Take care gentle hugs love Sheena xxxx :-) :-) :-)

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In my opinion, APS in and of itself isn't hereditary, but having autoimmune diseases are. Which one you get is up to your body. I've inherited autoimmune from my dads mother. So did my dad, my sister and my cousin. I am the only one with APS. None of my other sibling have anything as of yet.

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