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AVM Survivors Network

Those with AVMS of the lung OR HHT

Okay,

I know these are all questions for my doctor but just looking for thoughts and others knowledge and/or experience.

I was just diagnosed with a AVM of the lung, and most websites i come across say as much as 70-80% of people with avms of the lungs have HHT (a genetic disorder, which you would have a 50% chance of passing it onto your children) well, needless to say this scares me to death. I have 3 kids and the thought ofthem dealing with AVMs is just too much for me to handle.

So, I know ive talked to a few of you here with AVMS of the lungs, so my question to you guys is, do you have HHT? or been tested? What about your kids?

I know not everything you read online is totally accurate so i wonder if the numbers are really that highthat 70-80%of people with avms in their lungs really have this genetic disorder.

I hate this so much, cant take worrying about my kids, as im sure a lot of you can relate.

Anyway,

thank you for your opinions/experiences.

-Kelly

Hi Kelly. This link might answer some of those questions...

http://www.avmsurvivors.org/forum/topics/are-avms-hereditary

Just remember there are 2800+ survivors on here. You are not alone!

Hi Kelly,

Thank you for the friend add. I have HHT and my 5 children also have it. I had a cerebral AVM and 2 children have cerebral AVMs. One child has pulmonary and cerebral AVMs. The doctors would not treat my daughter's pulmonary AVM until she turned 11, which is now only a year away. We were told to periodically check her oxygen levels until she was old enough for treatment.

I'm really glad to hear that you found information regarding HHT. It is very distressing to me to see how much misinformation and lack of information exists regarding AVMs and their relationship to this fairly common genetic disorder. Many people on this site have AVMs (some multiples, extremity, with family history and other high risk categories) and have been told by their doctors and other well meaning folks that AVMs are not hereditary.

The only way you can rule out a genetic cause of your AVM is to have a consultation with a geneticist. The initial test is broad, looking at various genes. If they discover a mutation it will be a simpler (and less costly) test for your children or other family members because they will look at that specific gene. Your test will take about a month and the kids will only be a few weeks.

HHT can cause AVMs in any part of the body so it is important to be certain that it is not the cause of your AVM, especially if you have children. The good thing is that AVMs are rare and HHT mainly causes minor symptoms such as telangiectasies (small harmless red spots on skin) and nosebleeds.

I know this is overwhelming but the only peace of mind comes from a blood test. Good luck and please keep me posted. I will pray for you.

This link is an old thread that is too large to read in it’s entirety and while it has some well written and informative posts, it also has a lot of misinformation. I hesitate to recommend it unless you have the time to read through all of it. You can argue anecdotal evidence and personal stories but the crux of it is that regardless of what any doctors or others have said, it is possible for ANY AVM to have a genetic cause. The only way to know for certain is to have a blood test.



Barbara H. said:

Hi Kelly. This link might answer some of those questions...

http://www.avmsurvivors.org/forum/topics/are-avms-hereditary

Just remember there are 2800+ survivors on here. You are not alone!