All 3 of my children were just recently diagnosed with HHT and I was just wondering if anyone out there alos has this. I am curious to know your experiences with HHT just so I have a heads up. Also I am wondering if you regularly see a Dr. for the HHT and what your follow ups consist of. Thanks to anyone who can help me out!
I know there is an HHT support site and when I had questions about if I should have my other childern tested they had me contact Washington University in St. Louis. They might be able to give you more info. The people I spoke with said it did not sound like we met the criteria for HHT, but since you know your kids (very cute kids by the way) are affected they might be able to help.
Excuse my ignorance but what is HHT? I don’t remember hearing that phrase and am not sure if it’s related to AVM’s or one of the many treatments available for AVM’s.
Thanks in advance for filling me in. 
Christine W.
HHT is hereditary hemorrhgic telangietasia. Yes, it is related to AVM’s. It is a dominant genetic disorder passed from a parent to a child. The biggest symptom of HHT is AVM’s. My daughter is 3 and has already had 3 AVM’s. An AVM can form almost anywhere in the body at any point in life but primarily in the brain, lungs, liver, and nose. I am looking for support on HHT and am having difficulty finding it. I have gotten used to the AVM diagnosis for both my youngest daughter and son, but this diagnosis has left me somewhat stumped. I am sorry if I offended you by posting, I didn’t realize I would cause an issue, but I thought since it was the cause of my childrens AVM’s it might be the cause of someone else’s too and I could find someone to talk to.
Julie,
Do not be sorry! You are here like everyone else and just wanting answers to help yourself or a loved one. And in your case your children. I wish I could be of some help with this but I am sorry that I am not. I have herd of hht and I am currently pregnant and scared of passing the gene on to my baby. I hope you will eventually find someone you can relate to and can help with some answers for you and for your children.
Janice Brown (Andrew’s Mom) said:
I know there is an HHT support site and when I had questions about if I should have my other childern tested they had me contact Washington University in St. Louis. They might be able to give you more info. The people I spoke with said it did not sound like we met the criteria for HHT, but since you know your kids (very cute kids by the way) are affected they might be able to help.