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AVM Survivors Network

Are AVM's hereditary?

#1

Has anyone with a history of an avm, also had a parent, sibling, child, grandchild or any other blood relative have one, too? My doctors tell me avm’s are not hereditary. There seems to be no rhyme or reason as to who gets them and who doesn’t. Or is there???

#2

My doctor has said also that avm’s are not hereditary. No one else in my family has had avm’s. We never even had heard of them until now.

#3

My doctor’s told me that most AVM’s are not hereditary, however, there are some types and locations where they can be.=, I want to say that the liver is a place where it is, either the liver or kidney, can’t remember which.

#4

I’ve been told yes they are also have been told by regular Dr. that their not.

I have also been told that there is a blood test that can be taken to tell if you do. also you eye dr. can keep and eye on you they are able to see a lot.

tina

#5

Sue,
Every site I’ve visited and every doctor I’ve asked have said that AVM’s are not hereditary. They occur when we are still developing as a fetus. The cause for why or how they initially develop is still unknown. Before I was diagnosed with mine, neither myself or anyone in my family had even heard of this. They occur in only .14 percent of the US population. That’s roughly 250,000-280,00 people and a large percentage never hemorrhage/bleed or are even discovered. I hope this helps some. Take care.

#6

I have been told they are not, but ironicly in my situation, I have a great grandmother who died from a brain aneurysm. My younger brother and sister also have suffered from seizures, but not caused from an avm. It does make you wonder if there’s a connection though.

#7

No!

#8

My husband has a cranial AVM and his uncle had an AVM in his spine repaired about 20 years ago. But all doctors have said it’s not hereditary.

#9

The doctors say no. My mother had an aneurysm rupture 27 years ago.My father had a hemoragic stroke 12 years ago than another last year that killed him. now iv’e had an AVM and an aneurysm that bled june 1s’t 2010. its hard to convince me there not

#10

AVM’s themselves are not hereditary. There are many posts in this forum specifically on this topic and for obvious reasons. Nobody wants to pass this on to a child and everyone wants to make sure their family is safe and won’t have another person experience this. But really the odds are VERY low that anyone else in a specific family will have an AVM.

There are syndromes and specific genes that can be hereditary. The RASA1 gene is a culprit for many. Also, the following do/could have an AVM component and are known to be hereditary-

hereditary hemorrhagic telangiectasia or HHT (Osler-Weber-Rendu disease)
Sturge-Weber syndrome
Klippel-Trenaunay syndrome
Parkes-Weber syndrome
Wyburn-Mason syndrome

BUT for the majority of people suffering with AVM’s it really IS just a glitch in the formation of the system during fetal development. Statistically the odds are very low that you would have another family member with this, but it obviously is a possibility and “someone” has to be unlucky enough to have it happen :frowning:

We have members on the board who do have multiple family members with AVM’s.

Shalon

#11

My nephew’s other grandma thinks this too, that it must somehow run in the family. I’ll be curious to see what others say.

#12

Hey guys . . .

AVMs are not, in and of themselves, hereditary; however, nearly 70% of people with AVMs in the brain (CAVM), lungs (PAVM), intestines, colon, or other internal organs also have a condition called Osler-Weber-Rendu disease (aka: Hereditary hemorrhagic telangiectasia - HHT), and this condition, as the name suggests IS hereditaty, and needs to be tested for. It is rather rare, and few general practitioners know of it . . . just make sure you have it checked out by someone informed!

#13

This is very interesting Joshua. How does one get tested for it? I am thinking it would be a good idea for my daughters get checked out, just to be safe.to

Joshua M. Griffis said:

Hey guys . . .


AVMs are not, in and of themselves, hereditary; however, nearly 70% of people with AVMs in the brain (CAVM), lungs (PAVM), intestines, colon, or other internal organs also have a condition called Osler-Weber-Rendu disease (aka: Hereditary hemorrhagic telangiectasia - HHT), and this condition, as the name suggests IS hereditaty, and needs to be tested for. It is rather rare, and few general practitioners know of it . . . just make sure you have it checked out by someone informed!
#14

Sue,

From what I understand, there are two main stages to HHT testing.

The fist is “clinical diagnosis” . . . (taken from the HHT Foundation’s website).

CLINICAL DIAGNOSTIC CRITERIA FOR HHT

  1. NOSEBLEEDS, spontaneous and recurrent.
  2. TELANGIECTASES, multiple, at characteristic sites including lips, oral cavity, fingers and nose.
  3. INTERNAL LESIONS such as: Gastrointestinal telangiectasia (with or without bleeding), Pulmonary AVM, Hepatic AVM, Cerebral AVM, Spinal AVM
  4. FAMILY HISTORY- a first degree relative with HHT according to these criteria.

The HHT Diagnosis is:

  • Definite if 3 criteria are present
  • Possible or suspected if 2 criteria are present
  • Unlikely if fewer than 2 criteria are present.

Now you need to keep in mind that most HHT patients are asymptomatic until the 4th of 5th decade of life, and that there is always someone who is the first person to get the diagnosis in a given family. So . . . if you are not sure after this, you can go onto the second part – Genetic Testing.

A bit too much to go into here . . . so I will just give you the basics (if you want more info, let me know).

Through a blood sample, there will be extensive testing of the endoglin and ALK-1 genes - this testing must occur at one of 5 genetic testing labs in North America (or your respective continent). After mutation has been discovered in one person, it is faily easy and inexpensive to test other family members.

I hope this helps . . . :wink:

Sue Roth said:

This is very interesting Joshua. How does one get tested for it? I am thinking it would be a good idea for my daughters get checked out, just to be safe.to

Joshua M. Griffis said:
Hey guys . . .

AVMs are not, in and of themselves, hereditary; however, nearly 70% of people with AVMs in the brain (CAVM), lungs (PAVM), intestines, colon, or other internal organs also have a condition called Osler-Weber-Rendu disease (aka: Hereditary hemorrhagic telangiectasia - HHT), and this condition, as the name suggests IS hereditaty, and needs to be tested for. It is rather rare, and few general practitioners know of it . . . just make sure you have it checked out by someone informed!
#15

Of course, sometimes I wonder if they just haven’t yet found a connection. They told us our thyroid problems weren’t hereditary, but then why did my maternal great-grandmother, maternal grandmother, mother and myself all have the same problem?

#16

I found out after my Avm rupture…my fathers sister {my aunt} had one you might have to go back in your family tree…

#17

I have a huge family…my dad has nine brothers and sister and each of them has between 3-5 kids. My mom has 5 brothers and sisters who each have 4 kids and my grandmother had 13 siblings and grandfather had 10. Out of all these people I am the only one with an AVM. So I do not think they run in families.

#18

i was told since noone else in my family had 1 but me my kids whenever i have them should be ok so idk if that helps you at all

#19

i was told since noone else in my family had 1 but me my kids whenever i have them should be ok so idk if that helps you at all

#20

I have a cerebral AVM and my mother died from a cerebral AVM. I had genetic testing done to see if I have HHT and the test was negative. They did tell me that I may have a type of HHT that they may not have seen yet. I was told at Johns Hopkins that they don’t think that I have HHT, University of PA thinks I do have HHT so go figure…lol. I do think I have some type of HHT which makes my AVM hereditary. In any case I don’t think for most people that AVM’s are hereditary but for people that have HHT or other syndromes like HHT make AVM hereditary. I hope this helps.