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Sticky Blood-Hughes Syndrome Support
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How many in your family have APS and/or other autoimmune issues?

You hear it all the time, is APS hereditary or not.....

Then you hear from patients who have several family members with APS or other autoimmune diseases.

Dr Hughes said once if he could find a family with 10 family members affected they would be able to pinpoint the gene....

Just wondering if there really is a family out there with that many in it?

Will we know in our lifetimes the answers?


PS only other one confirmed in my family is a first cousin with "atypical MS" but never checked for APS....

11 Replies

Hi kristina

1 my dad, sticky blood, 2 cousin on dads side rheumatoid arthritus, 3 dads sister i suspect had Hughes, she had 18 miscarriages, pre discovery of Hughes. 4 grandmother (dads side) rheum arthritus. 5. Mum has autoimmune condition (lichens schl?) 6 mums aunt had sle.

Not quite there but more than coincidence???

Hope you well today

take care gentle hugs sheena xxxxxx jessielou xxxxx :-) :-) :-)


This is not a Poll question but perhaps a survey is needed. Paddy I think you are the one for this! Could we help Prof Hughes find his 10 family members?


Not sure how to do a poll on this, but I am thinking that yes, we need to help find that family!!


What a really good, interesting question and hopefully be useful well done

My DAD HAS HAD A DVT also HIS BROTHER. , ME AND MY SISTER, my SON and some of my NIECES have all got FACTOR V LEIDION. Not sure about dad or his brother or his brothers family ..

MY MUM hasn't been tested but has always had joint pain since a child which improved when she was put on malaria medication, ???LUPUS,

Well done again and thank you it would be lovely if we could all help in this way it would be wonderful woudn't it

Love Karen xx


Your wish is my command a new poll has just gone up today so will have thios poll up by end of week to give the other poll a chance to get answers. I think its a great idea and in answer to your question only 4 my mother(Clots), grandmother Died of brain clot, me and my daughter showing signs



Just a gentle reminder that there are many including myself who have no idea of their family background.

It does raise questions about wether or not to have my son tested or not.


Same here- my dad was adopted and my family not very close. My dad wouldn't even tell us if he had high blood pressure (like its some big secret). family, sheesh, sometimes they are weird! :)


Judes, hope you ok? it is a really intresting question as i think we all probably have more family history than any of us realise and getting your son tested is your choice but the way i look at it is if you have him tested at least at that point you have an answer and if symptoms appear you can re test but at least you tried. This is the annoying thing with this condition it is no so black and white.


Hi Judes.

My son wanted to be tested, apparently even if he was positive there would be no change in treatment, not even Asprin unless he had a clotting event.he was told he doesn't even have to take Asprin before flying.i don't really understand it.pehaps someone else does.

Thank goodness it was negative, he was positive to fctor V leidons which i think is quite common.

I think a poll to see how many of us have factor 5 leidons would be good.

Sorry you don't know your family history, my daughter is adopted so I think I understand a bit, Must be difficult.for a reminder like this

love karen xx


Hi there

I know that my grandmother died of Lupus (a long time ago, first diagnosed with Rheumatoid arthritis) and we suspect that my aunt (the daughter of the grandmother) has had a low grade lupus her whole life - her symptoms miraculously cleared up when she hit the menapause! Also all the sisters from that family suffered a miscarriage before they were able to sustain a pregnancy.

I recently asked at the pre-pregnancy clinic about the risk of passing all this on (i have Lupus and APS) and they said the chance wqas tiny. I then mentioned my family history and they said "ah, we can't tell you then if it runs in the family". I was fairly cross with that as an answer - imagine if i hadn't mentioned the history!!

I opted to not have my own children and look into adoption as I don't think I could live with myself if I knowingly passed it on... it's a very personal decision but it would be made easier if we understood better the geneticals and chancce of passing these illnesses on!



Poll up so let see what information we get and Tasch i agree having kids and living with that decsion is very personal and i wanted to say that i am very happy for you to make a decision like that which is difficult and hope you find that special child as i have with my 3 kids 2 by blood the other is my step son.



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