Are there many of you that have been diagnosed with Hereditary hemorrhagic telangiectasia (HHT), also known as Osler–Weber–Rendu disease after discovering your AVM? I'm meeting with a geneticist Friday to discuss potentially testing for this.
I had a uterine AVM, which are extremely rare, so I'm interested to see if they'll move forward on genetic testing or just monitor me via other means.
Hi, Caroline, we have a lot of members with HHT, and many who are diagnosed after arriving and learning about it on our site. It is not all that easy to test for, however, and often requires comparing dna to another family member who has already been diagnosed. There are certain clinical criteria that should be met before testing is indicated. You can learn more about this at the site curehht.org