I will get tested eventually perhaps, but at my age, no real concern. Concern is with younger generations now that so much more is known. I had heard of HHT way back when two of my cousins back in the 70s had to travel from California to Utah for testing and treatment but so little was known about the genetic disorder so just somewhat forgot about it but in current times, so many of my Mother’s line have developed symptoms. So far with my children all surgeries are in preventive mode of a ruptured avm as happened to my 57 yr old son. He was taken to hospital for a massive migraine headache and ended up in hospital for 21 days with a brain bleed and a drainage tube hanging out of his head. A massive wake-up call for testing of other members. His second surgery was preventive, removing a bulging avm before another rupture. This is all new but the amazing thing about all of this is that the a couple of Grands that we were positive to have HHT, constant massive nose bleeds, are not carriers! Go figure.

And, no, not all tested have the mutation. My Grandson having surgery is only one of 4 to carry the mutation but we understand that if I am a carrier, then I can pass it on to my children. If I don’t have the mutation, then my children and their future children will be free of the genetic mutation. Our understanding to-date. May change tomorrow???