My husband has HHT . Daughter has been tested but no results yet. Praying God spares my children. I have two granddaughters. I have another daughter who has not been tested. We found the HHT Center in Chapel Hill after years of nosebleeds. He has not been screen yet for AVMS. I found the center through HHT.org which was a God send. I pray in my lifetime a cure will be found. I pray that anyone with HHT on this site will join HHT.org . This is international . I want a cure for this :) We need anyone in US to get involved with the political side where we can get funding to find a cure. My husband is on Amicar now and it has help his bleeds except when he misses a pill then he knows it. He is on Estriol ointment also. We do not live a normal live. A lot of things we don't do anymore because you never know when we will have a nosebleed. Most people think nosebleed. Couple paper towels. No more like a roll of paper towels and we have not got to the AVMS yet. Lord please we need a cure. I said when I researched and went down this road even if Jeff did not have HHT this was where I would park myself . With this disease and I am. Funny I wrote Dr. Oz about four times hoping he would have this topic on his show. I will keep writing him once a week and maybe it will happen . Need so much for the Health professionals to be aware of this. Doctors do not understand this. Sorry for the long post just had to talk.
I hear you, Fish -- we do need a cure, and thank goodness for the HHT Foundation International. I see there will be fundraising walks all over the country this month, including a National HHT Walk in DC on June 9: http://hht.org/donate/special-events-2/
Best wishes to your family!