Anyone here got Factor V Leiden?

skintchick

Please note: I AM NOT LOOKING FOR MEDICAL ADVICE.

That said, I do want to chat to others who have Factor V Leiden. I found out yesterday that I have it, it's a gene mutation that makes me more susceptible to deep vein thrombosis and has been the cause of my miscarriages.

I'm interested in knowing more, my parents are quite freaked out by it as at least one of them has it and all my family now need to be tested.

I'm not really that bothered, I don't fly long haul and I'm pretty active, plus I have a treatment plan for future pregnancies now, but I'd like to know more about it generally. So does anyone on here have it? Apparently about five per cent of caucasians do.

peachyprice

Sorry, I don't know anything about it, but I'm pleased for you that you now have a reason for your m/c's and it sounds like you can now have a successful pregnancy with the right treatment, well done. So often the cause multiple m/c's is never found and women have to accept it 'just is'.

vickietm

Hi,
I am lucky enough not to have inherited it but my younger sister has it. She found out after a blood clot in/behind? her eye burst.
She had a baby 6 months ago, she has been taking aspirin since she found out which I think helped her not to miscarry.
I know what you mean about the parents, as my dad doesn't (or more likely does but doesn't want to admit it) understand when we try to explain the genetics (I work with genetics everyday in my job so can explain it very well) he won't go for the test even though my mum has tested negative. It is as well to note here that my paternal grandmother suffered with clots and thrombosis and suffered a stroke which could all be linked.

I'm sorry to hear you have found out you suffer with it, but my sister honestly leads a normal life (albeit with a bit less sight in one eye) and is just careful about the things she does. Oh and while she was pregnant she had to have daily clexane injections but she soon got used to them.

If you want to chat, she is not on here at the moment but I can ask her to register or I can act as a go-between.

Vickie

Courgette

There's a thread about this on the pregnancy loss board on mumsnet. I thought it was probably you who started it but details don't match

Munchie

Hi I also Factor V (heterozygous - one gene mutation).

Mine was discovered after I suffered a DVT following knee surgery. Had I not suffered from the DVT I would probably still not know that I carried the gene.

I don't know which of my parents has given me the gene because the hospital/GP won't test them. My sister insisted that she was tested by her GP and she is negative.

I still have problems with my leg as a result of the DVT but am still able to do most things within reason but I have to have Clexane injections on long haul flights.

I was told that of the 5% of the population that carry the gene the vast majority don't even know they have it.

The main thing is that you know you have it and are therefore in a position to let medical staff know prior to any operations etc so you can have the relevant treatment prior to minimise your risk of developing a DVT.

All the best.

skintchick

Courgette wrote: »

There's a thread about this on the pregnancy loss board on mumsnet. I thought it was probably you who started it but details don't match

No, I don't go on there. Tis a scary place.

skintchick

vickietm wrote: »

Hi,
I am lucky enough not to have inherited it but my younger sister has it. She found out after a blood clot in/behind? her eye burst.
She had a baby 6 months ago, she has been taking aspirin since she found out which I think helped her not to miscarry.
I know what you mean about the parents, as my dad doesn't (or more likely does but doesn't want to admit it) understand when we try to explain the genetics (I work with genetics everyday in my job so can explain it very well) he won't go for the test even though my mum has tested negative. It is as well to note here that my paternal grandmother suffered with clots and thrombosis and suffered a stroke which could all be linked.

I'm sorry to hear you have found out you suffer with it, but my sister honestly leads a normal life (albeit with a bit less sight in one eye) and is just careful about the things she does. Oh and while she was pregnant she had to have daily clexane injections but she soon got used to them.

If you want to chat, she is not on here at the moment but I can ask her to register or I can act as a go-between.

Vickie

When you say she is careful, what sort of things do you mean? What do I need to be careful about?

Yes I will have to have Clexane daily when I get pregnant. Sounds delightful! I hate needles!

Pollycat

I googled it and found this:
http://www.fvleiden.org/

It says there is an email forum if you wish to talk to others about "Factor V Leiden and/or clotting related".