hereditary hemorrhagic telangiectasia

[katystar]

Hi

Just wondered if anyone has any experience of this in pregnancy. Quick history my mum has this in a mild form as did my Nan (although she died from a brain hemorrhage caused by this condition). My sister though had a more severe version of it which ultimatly left her parylised and was a factor in her death.

When I had my first son I had to go for regular checks for this and I am waiting to find out if I will need to again with my 2nd pregnancy, I suppose what I want to know is has anyone got this condition and did they pass it on to their children, am I likely to pass it on 2nd time if I didn't first time. Any advice would be much appricated as I am worrying more about it this time than I did last time! I should also say they think I am a carry all though I currently show no symptoms and may not ever do, I cant seem to get a straight answer about being tested to find out if i do have the same thing or not, more of a wait and see answer. Sorry for the length but any help would be appricated.

Katy x

Hi Katy, no personal experience but I know a man with this condition and he hasn't passed it on to his children (tho he was worried he might). I'm sure you're aware of hht.org - which seems to have a discussion forum, wonder if someone there might be able to help?

If you have it not passing it on the first time doesnt make it more likely that you pass it in the second time - the chance is the same each pregnancy.

Have they specifically said that they thought you might be a carrier?

Yes because my mum and sister have it, but won't actually test to find out for sure, not really sure why though. i will check out that website now thanks.