Does anyone know if APS is genetic? Should I get my sons tested?

[Lesley_D]

I would really welcome your comments.

Thanks

Hoping you are all well

Lesley

[paddyandlin]

This is a very difficult decision and one i think you have to take a really good look at. The recommendation is unless your children are showing signs then there is no point if it was a girl when she came to child bearing age to let her know. In boys or young children unless they show signs the answwer is no and it may be worth getting other tests to see if anything is signalling things like vit d thyrod extra. As for Herditary the information is now point to yes but it is not concisdent (SP) so i hope i have answer your question for my children we were told as kids are still devloping and hormones changing and growing it can be difficult but as i repeat my self if they show signs speak to your do.

paddy

[Gadgets]

My 22 year old daughter has symptoms, migrain, aching bones muscles, fatigue and has been tested negative (but that does not mean she does not have APS)

Other members have said that even by having a negative test has caused problem with there children getting a mortgage etc when answerring the questions in the application forms small print!

I dare say others will explain this better.

Some say no point in testing unless something happens to them.

This will be interesting post.

Regards

Garry

[melissa96770]

this was one of my first questions to prof hughes last year, he said it does have genetic tendancies. although no one else in my family has it. i asked him about the children (one boy and one girl) he said they wouldnt test them unless they display symptons.however he did say that i should get my daughter tested after she has started her periods (lol she is only 4 at the moment).this is mainly because hormones have a profound effect on blood, and if she were to go on the pill its a must to know first. x melissa

[MaryF Administrator]

I feel it is something to keep an eye on, without jumping to conclusions, there have been some signs in my children, which remind me so much of my childhood, however I would not wish to jump to conclusions, I am just carefully keeping an open mind, and do regularly discuss any issues with my GP, who appears to understand that patterns can sometimes run in families. MaryF

[BridgetGoldie]

I too have a girl (25) & a boy (22); my daughter growing up experienced many things I remembered from my childhood and I had her tested when she was younger and the test came back negative.

As she got older the signs continued and at 19 she was tested again and this time it was positive. I was told if they had tested me when I was younger it probably would have been negative too. My son has never shown any signs.

My daughter was diagnosed now 6 years ago and is only on aspirin and shows minor symptoms and has had no clots (fingers crossed).

I think with many people and I know this is true with myself that it was undiagnosed for so long, that is when the damage was caused and was only diagnosed after suffering major clots! So hopefully until a cure is found knowledge definitly is power!

Bridget

[Lesley_D]

Thanks Bridget

You see, i have had problems for 30 years, really since all my miscarriages in the 80's and lots of other things too. This has resulted in me having major lung problems, and if I can help my sons 26 and 28 not suffer the same or similar then obviously I want to if I can. I hear all you comments, for my youngest son, he has extreme fatigue and joint pain, and actually I only thought today, could this be or am I being an over protective mum? My eldest seems fine.

But as always thank you all for you valued comments

Lesley

[Lesley_D]

I should of said, and only got my Dx last year

[daisyd]

Hi My Son was determined to be tested. The Haematologist tried to persuade him not to but he had it done anyway.

Thank God it was negative, I haven't mentioned to him that he could have it anyway without it showing up in his blood.

When he went to get the result he saw another Haematologist who said would have refused to test him, as their is no treatment for it unless he has a clotting problem not even Asprin.

Love Karen xx

[volvoc30]

Regarding genetic. I have a brother, and myself who both have Hughes Syndrome. So i think there could be a genetic disposition somewhere along the line.xx

[panda60]

After I was diagnosed in 2001 my then 80yr old mum had the test which was positive but as far as I know it hadn't affected her - more the polymyalgia and lack of thyroid and osteoarthritis with other conditions thrown in., and now Alzheimers. My dad has always suffered with migraines, but then so do lo's of people who don't have Hughes.

My brother is fine - one of my twin sisters was diagnosed with ME a few years ago but has made a full recovery and the other has polymyalgia diagnosed last year, but no Hughes symptoms.

My boys are 29 and 27 and very healthy so at the moment I hold no fears for them.

I'm sure that there must be a genetic link somewhere as there seems to be with other autoimmune disorders.

Caroline

[tim47]

My youngest, in his 30s with a very young daughter, wanted to get checked- and did so and was found negative I'm delighted to say. I had had my first signs by his age though we had no idea what it was in those days.

[Suzypawz]

Hi, I was told 10 years ago by my original 'specialist!' it wasn't passed through families & only women got it!.....yep......right!!!!

Well....as we are well aware men do get it!!!! & there has been a lot of results showing that it can be connected through families.

I am watching one of my sons at the mo', he is 18 & has started to complain of pins & needles frequently in his right leg, fatigue & headaches? I havn't shown my concerns yet....but if I see any more signs I shall suggest it, as I dont believe in waiting till something happens & then do something....as some 'doctors' would prefer.

Hope all will be ok with yours xx