hello everyone, my name is tea and I’m from PA. I am a patient who had a brain avm when I was 6 months old i did have brain surgery and was paralyzed at 6 months old caused by my hht that wasn’t diagnosed until 21 when i was 6 months pregnant with my second child.my mom has hht and my 3 year old daughter have hht and 3 brain avm. im taking it day by day and hopefully i can gain a lot of knowledge from this platform . sometimes its depressing when your surrounded by people that don’t understand your daily struggle. if your able to share info please do i will greatly appreciate it
I had an AVM in my left temporal, so my experience is quite different. I do understand some about those around not having the foggiest about some of the things we experience. We have several HHT members here, and hopefully will be a good help for you. While most of us do not have HHT, we will all be here for you and do what we can, share experiences and support you in anyway we can. Take Care, John.
Ms. Marianne Clancy is President of CureHHT.org. She may be a helpful resource for you. Also I make mention of current and a host of other resources in my book (no pressure to buy) “Malformation: when bad things happen to the right kind of people” from Westbow Press written by me! I’m not a doctor but 4 time ruptured AVM survivor. Blessings as you continue, grace and peace as you go!
Welcome @tea! It’s great you found us, though less than ideal to have an HHT diagnosis.
As well as the resources that Paul has shared with you, we have a decent contingent of HHT members here in our @PulmonaryHeartHHT group. I took the liberty of adding you to the group.
My experience of reading the stories of others here is that often HHT is identified when someone discovers first an AVM or bunch of AVMs in their lungs, which is why the group is a bit of a join of pulmonary, heart and HHT. I hope that by tagging the group in this post, some of the others will say hi.
You’ll find many more stories from HHT and pulmonary patients in the types of AVM category:
Very best wishes,