I know these are all questions for my doctor but just looking for thoughts and others knowledge and/or experience.
I was just diagnosed with a AVM of the lung, and most websites i come across say as much as 70-80% of people with avms of the lungs have HHT (a genetic disorder, which you would have a 50% chance of passing it onto your children) well, needless to say this scares me to death. I have 3 kids and the thought ofthem dealing with AVMs is just too much for me to handle.
So, I know ive talked to a few of you here with AVMS of the lungs, so my question to you guys is, do you have HHT? or been tested? What about your kids?
I know not everything you read online is totally accurate so i wonder if the numbers are really that highthat 70-80%of people with avms in their lungs really have this genetic disorder.
I hate this so much, cant take worrying about my kids, as im sure a lot of you can relate.
thank you for your opinions/experiences.