Quantcast

AVM Survivors Network

Hht

Anyone out there have HHT? I could use some information. Thanks.

Hi, Lisa, how would you feel about starting an HHT group? There are a few dozen members here with suspected or diagnosed HHT, and so far no forum. Here are some members you can connect with:
http://www.avmsurvivors.org/profile/Sarah997
http://www.avmsurvivors.org/profile/JulieBaker
http://www.avmsurvivors.org/profile/JenRivard
http://www.avmsurvivors.org/profile/CatherineGaunt
http://www.avmsurvivors.org/profile/NicolleMirabella
http://www.avmsurvivors.org/profile/TinaUnderwood
http://www.avmsurvivors.org/profile/Lori167
http://www.avmsurvivors.org/profile/JoshuaMGriffis
http://www.avmsurvivors.org/profile/VictoriaYork
http://www.avmsurvivors.org/profile/BeckyArriola
http://www.avmsurvivors.org/profile/MichelleHawksworth
http://www.avmsurvivors.org/profile/HelenRoddy
http://www.avmsurvivors.org/profile/RabeccaPrimeau
http://www.avmsurvivors.org/profile/Alinta
http://www.avmsurvivors.org/profile/ChristineBolender

Best wishes!

I would recommend contacting Christine Bolender on that list…
http://www.avmsurvivors.org/profile/ChristineBolender
If you have a pulmonary AVM or multiple AVMs then chances are you have HHT. If you have another close relation who has an AVM once again there is a possibility of HHT.
I hope this info helps.

I don't mind starting one, I just have to figure it out first. I will work on it in the next day or two. I am now off for the summer and can dedicate more time to it. I have my appointment at the HHT Center in Georgia on June 21st. The local vascular surgeon believes I have HHT. He contacted his mentor at Georgetown University and he agrees. He also contacted Mayo Clinic to get their opinion and treatment options. So, we are hitting it hard from several angles. I have had two confirmed AVMS (brain and renal artery) and possibly one in my colon (almost impossible to find). Now they think I may have one in my lung and liver. My son had chronic nosebleeds for a few years when he was younger. My grandfather died in his 40's from a stroke and my dad died at 50 from cardiac arrest. Neither were checked for AVM's at the time of their death. HHT center will do genetic testing. Sorry this is so long. I figured I should post some history to see if it matches up with other peoples experiences.

I'm so glad you have an appointment, Lisa. Before the 21st, you can learn about anti-angiogenetic drugs and diet, which may help keep those AVMs in check. You can starts here: http://www.avmsurvivors.org/forum/topics/anti-angiogenesis-stopping-the-growth-of-new-blood-vessels?commentId=1543517%3AComment%3A468237
We are rooting for you -- stay strong.