Where (if ever) can I find quality information on how AVMs pass from generation to generation. My mom had multiple, I have one small one, and I'm concerned about how family members can even monitor for this. I only know about mine because I walk funny.
Hi Sara. You may wish to join this sub-group…http://www.avmsurvivors.org/group/hht
There is info there that you seek.
Pleas also read…http://hht.org/about-hht/symptoms/
I've never been diagnosed with a syndrome so I'm curious as to how other people with hereditary avms are treated (outside of syndromes).
The short answer is, the same way anyone with an AVM can be treated. The difference with have a diagnosis of HHT or another syndrome is that you would be screened more thoroughly and more often for AVMs; for example, your lungs and internal organs might be screened for AVMs. Also, a diagnosis might mean that other family members would be screened. You would also be counseled about the possibility of your children having the same condition.
I appreciate the help Dancermom but I've never even had a doctor mention about what risks/or needs the child of a hereditary AVM survivor might have. Knowing that some genes occur every other generation this sort of freaks me out.
Most doctors really don't know about genetic conditions for AVMs. I don't think any of the conditions can skip a generation; I know HHT doesn't. There is a 50/50 chance that children will inherit it.
Hi Sara, I was going to post the HHT group but was glad to see it was already posted, if you research into it and ask around you should find out some much more detailed information, and I have heard there are a few conditions that tend to bring AVMs on.