Do you think our children are likely to have APS? Is it known to be genetic?

[siveinvan]

As a mom of a 15 year old girl, just wondering...thanks all.

[MaryF Administrator]

Hi there, there is nothing conclusive, other than, some families seem to have close members who have it or related conditions. My daughter is 15 and has just had a diagnosis of SLE Lupus and probably Hughes and is being treated appropriately, my young son has suspicious symptoms and has for years, however I am very careful not to jump to conclusions, for their sakes as well as my own. So keep an eye. Professor Hughe's latest blog on here says it all really. Mary F x

[siveinvan]

i"ll read it. thanks mary.

[dulcie]

At my recent apponitment at St.Thomas hopstial with Professor Khamashta, i was told that the chance I have passed it on to my two children is extremely small. Also I have no family history of antiphospholipid syndrome.

[Rhian21]

My daughter who is twelve seems to be a carbon copy of me and my symptoms ! I was told at St Thomas' that she would not be able to be referred there until she's 16. Her blood tests in Wales were negative. There is nothing I can do but wait and pray but at least I am in a better position to help her manage her symptoms ! My poor mum had nothing to go on !

[WayneL]

Hi, Sivein.

At a recent apptmnt here in Australia, with my daughters specialist, he remarked that her condition was passed on to her by her biological parents and that there was nothing she could have done to prevent this from happening.

It made me wonder if genetics play a much bigger part in this than we currently know about and do we watch our children to see if they develop symptoms?

I think we need to err on the side of caution and observe our kids, but not become too paranoid about it, as they'll all have the normal things like"Chicken Pox"etc as they go on through life.

Doesn't stop us being concerned, I know, But at least being aware of it might help prevent some of the anxiety us parents get.

Wayne L

[jessielou]

Hi hon

A question that worries many of us I'm sure, prof Hughes blog goes into this, lots more research needed. Some families do seem to have a predisposition towards autoimmune disorders, there are quite a few members of mine with autoim dis.

Very concerned about my youngest as he having quite a few symptoms, he has autism tho so testing difficult, (needle phobia),

Hoping they get some answers on this for us all.

Take care gentle hugs love Sheena xxxxxx

[siveinvan]

True, Wayne. Good point. I'm trying to balance *appearing* calm and having internal freakiness when she gets a stomach ache. How old is your daughter? And how did they assume it was passed on, and not like the rest of us, just bad luck?!

Thanks; you are so right.

Sive.

[siveinvan]

oh, and sheena. that's such a good point about predisposition towards autoimmune disease...and for your little guy and the needle phobia....not fun.

[SueLovett]

Prof. Hughes said at one of the Patient's Forums that his youngest patient was 4 and on warfarin!

Prof. Khamashta, who I see, thinks I have had it since I was 15 or earlier so I would say yes children can have this illness.

I also remember a reference to their being a 'genetic link'. There are examples of several family members having it.

We now know my Mum suffered from Hughes but this was only discovered after her death.

My sister does not have it.

I recently found out that I had a great uncle who died of a sudden heart attack at the age of 4. Who knows if he had Hughes?

I think Shenna's idea that there is a predisposition is the likely explanation.

[siveinvan]

I know that children can have it; I was just wondering about the genetic bit. Thanks so much Sue.