Hi Just introducing myself

[Andria 30]

Hi Im Andria , im 30 and i have just come across this site, i have recently been diagnosed with HHT And factor v lyden. Both my dad and sister also have this.

We are finding really hard to get information on this condition and many doctors just look at us blankly.

If anyone can point us in the right direction to get some info i will be really grateful
I have not been offered any further tests or anything which i find really worrying.

Great site its good to realise there are others out there.

Hope you all are having a great christmas despite this condition.

Andria x

[Matt]

Hi Andria, and welcome to the site 

[philbarto]

Hi Andrea
              Just reading the threads on this site will give you a tremendous amount of info. As for tests firstly if you have been diagnosed with HHT you should be having five yearly cat scans of your lungs to search for PAVM which is usually a malformed tiny blood vessel which is treatable by placing a coil to block it off. Second you should ask your HHT consultant or even your GP for an MIR scan to look for brain AVM again this is treatable but you will only need the one scan as you are born with it so if they dont find one then you should not get one. I am not trying to scare you in any way but these are the facts. If you have HHT you will be bleeding somewhere the most common is nosebleeds again treatable if they are severe enough to warrant blood transfusions then a full nasal closure or Youngs Procedure is recomended. The next place for bleeds is the stomach or gut then the lungs and finally and exceptionally rare the brain, but all treatable. If you dont have anaemia now you will at some later stage it all depends on age and where you bleed from. Like I said this site and other relevent sites are a hive of information but feel free to contact me anytime
best regards    Phil

[jean cadden]

hi andrea, i wasn't diagnosed until i was in my late fifties, my only advice is to learn all you can about h.h.t. and never be afraid to confront doctors with that knowledge, many of whom know nothing of this condition, good luck jean