Anyone have HHT (Hereditary hemorrhagic telangiectasia)

[bumperella]

Does anyone have, or have experience of, pregnancy with a condition called hereditary hemorrhagic telangiectasia (sometimes known as Osler Weber Rendau syndrom)?
Or any other condition involving AVM's (arterio venous malformations)?
I'd really like some anecdotes/ support/advice from people with experience of it!

Hi, I don't have this condition but I am a healthcare professional who has some awareness of this. Do you have any pulmonary AVMs, or when were you last checked for them? If you are under a lung specialist I think you should contact them for advice. I hope that someone with more first hand knowledge replies to you!
Best of luck.

Hi papertiger, you must be one of the very few medical folk who've heard of it even! Thanks for your reply - was offline all weekend.
I do have pulmonary AVM's and was checked only a few of weeks ago (at 12 wks preg) by shunt test: they've scanned before but can't see any (too small) but I get a positive echo-bubble. The odd thing with the echo-bubble is that the bubbles come through at three beats - I thought 8 beats was normal for pAVM?
But I've not been tested for cerebral AVM's and am worried about this + labour. Consultant was concerned to give me ceasarian, under GA (I think) as I couldn't have epidural/spinal in case of spinal AVM's. But she was worried about blood loss from any pelvic AVM's.
The only AVM's have been tested for are pulmonary, I think this is normal in UK though.