Quantcast

AVM Survivors Network

Hht

Hi all

As I have mentioned before, my daughter Ashleigh has tw avms of the brain her doctors thought this may indicate HHT, so we saw the genetics dr last friday, she examined Ashleigh and thinks she probable that she had this disorder as she has two or three other symptoms, I also apparently have some signs of this syndrome.

They have taken bloods for testing but this can take upto 7 months for the results. I am very worried bout this and do not know what the future holds. Any advice would be apprec.

thanks

sue x

Hi Sue,

I am pretty new to this world of AVMS but I have read about everything I can about HHT in the last month!! I was diagnosed with an AVM of the lung, which when they are in the lung its about a 70-90% (the actual percentage varies A LOT from source to source, but everything i have read & each doc ive talked to all said when an avm is in the lung chances are its because of HHT. This freaked me out, and I am still holding hope that I am in the minority and do not have HHT, as I have 3 small kids, and the chance to pass that gene onto each child is 50%. I have yet to see a genetics doctor, but in the process of getting that appointment because my kids pedi wants a diagnosis from me before she puts the kids through any screening, but the idea they have this "time bomb" on their body just kills me.

Anyway, sorry to ramble so much there... but from my understanding with HHT 2 of the biggest concerns are of course AVMS in the brain (which you already know your daughter has and I am assuming that is being cared for, and the other is AVM of the lung which carries dangers... I read that as long as those 2 things are monitored, you should be okay. Of course theres other things also associated with HHT but they arent the "time bombs" as the brain & Lung AVMs are. so as far as worry with your daughter you are already taking care of at least 1 of the biggest 1 dangers of HHT (the brain AVM) and also, a lot of people with HHT only have nosebleeds! That gave me a little comfort knowing HHT isnt always such a threatening thing! Being aware you have it, is some of the battle!

I wish you and your family the best of luck, I know how scared you are, as I am in a similar boat :(

Keep us updated!

Thanks for your advise, yes this is worrying, currently its a wait and see for both ash's avms saying we need to wait untill her brqin matures.

There are some concerns about me because I have brought blood up from my lungs, but guess i will ahve to wait the waiting game.xx