Hey everyone, just to let you know, my sister has lung avms and has had two brain avms, one of which is still under treatment. Doctors were convinced that hers were NOT hereditory… as she showed no signs of HHT however, after further discussions and speculation they decided to run some tests and send samples of her blood to the local genetics centre…
The results came back and there is something peculiar with her genes and we as a family have all been advised to go for testing…
We havent been told exactly what was found as we are waiting for a doctors appointment from them to run through all the specifics with us.
I’ll keep you updated as to what they have discovered and let you know.
Brenda, I am so sorry to hear about the loss of your mother to an AVM. When did you discover yours? Since PA thinks you do have HHT should you be concerned about it being hereditary for your children? Did you get tested with a simple blood test or was there more to it? I have had 3 cerebral AVM’s and after reading all the comments so far about this question of whether they are hereditary or not, I am wondering if I should be tested for HHT and have my daughters tested as well. Thanks for your help. I hope you are doing well!
Brenda Dinch said:
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.
Helen, please do let us know what you find out from the testing. What exactly were the tests? Do the doctors think she can still develop more AVM’s? I have had 3 and I am wondering if I can keep getting more. They say I was probably born with all 3 but now I am not so sure. I find it so interesting that many doctors are so convinced about something and then later discover they are not sure or they were completely wrong about their thinking to start with. After my many years of experience with the medical field involving cancer, AVM’s, etc., I am convinced that doctors are mostly making educated guesses. There are too many unknowns! We have to voice our opinions and needs and trust our own instincts about medical care and treatments with the doctors along side us to help us make sound and wise decisions. I pray your sister is doing better. It sounds like your family has been through some tough times.
Helen Roddy said:
Hey everyone, just to let you know, my sister has lung avms and has had two brain avms, one of which is still under treatment. Doctors were convinced that hers were NOT hereditory… as she showed no signs of HHT however, after further discussions and speculation they decided to run some tests and send samples of her blood to the local genetics centre…
The results came back and there is something peculiar with her genes and we as a family have all been advised to go for testing…
We havent been told exactly what was found as we are waiting for a doctors appointment from them to run through all the specifics with us.
I’ll keep you updated as to what they have discovered and let you know.
As I read this thread I want to SCREAM! YES!!! It’s so frustrating.
AVMs are a vascular malformation and there are several genetic conditions that cause vascular malformations. It has been stated on this thread that these genetic conditions are rare but I believe that is FALSE information.
I cannot speak for any condition other than mine but please listen.
At the age of 13 I was diagnosed with an AVM. At the time my mother specifically asked the best neurosurgeons and neurologists in the state of CA if it was hereditary and they said no (ironically one of these drs also treated my daughter)
25 years later my youngest daughter has a seizure. Even with my history of AVMs the ER drs and on call neurologists said it was just a formality to admit my daughter for more testing. When I came back from lunch one day and my husband told me my daughter had an AVM I collapsed on the floor in tears. Not only one AVM but multiple AVMs. Next child tested has 2 AVMs in her brain and 1 in her lung. ALL 5 children test positive for HHT, Hereditary Hemorrhagic Telangiectasia.
1 in 5000 people have HHT. HHT is a defect in the gene that forms the arteries and veins so there can be AVMs anywhere in the body. This leads me to the diagnostic criteria and my personal observations.
Of my 5 HHT positive children
2 have frequent nosebleeds (one also has telangiectasies)
2 have cerebral AVMs
1 has pulmonary AVM (also has cerebral AVM)
1 has venous angioma
1 has telangiectasies (small red spots or mini AVMs on the skin surface or in mouth)
The one who has the visible telangiectasies is the eldest, now 19. She did not have any signs until age 14. She sctually had the spots checked by several doctors, none of whom identified it as a telangiectasia. She had nosebleeds as a child but they did not seem abnormal until recently, in the last 2 years.
I have no symptoms of HHT (other than AVM), neither do my parents, aunt or cousin.
Too many doctors are completely ignorant when it comes to this condition. At the hospital where my daughters were treated we met drs who were amazed by us because they had no idea it was hereditary. The doctors who do know about it are too quick to dismiss it because of it’s “rarity” or because of the diagnostic criteria.
Here are what I consider to be the problems of the diagnostic criteria as posted earlier on this thread.
1. NOSEBLEEDS, spontaneous and recurrent.
From the HHT.org website, symptoms such as nosebleeds often to not occur until 30’s or later. In my own family you see ony 2 of the 6 HHT positive individuals have ever had nosebleeds and those did not occur with any frequency until late teens in one of them.
2. TELANGIECTASES, multiple, at characteristic sites including lips, oral cavity, fingers and nose.
Same as above. These signs do not tend to show until mid life if at all. In my family only one of 6 has these visible lesions.
3. INTERNAL LESIONS such as: Gastrointestinal telangiectasia (with or without bleeding), Pulmonary AVM, Hepatic AVM, Cerebral AVM, Spinal AVM
These would not be discovered without testing. However, since the introduction of the CT and MRI there have been many more individuals diagnosed with AVMs. What used to be an extremely rare disorder is now becoming more common.
4. FAMILY HISTORY- a first degree relative with HHT according to these criteria.
The first flaw with this criteria is that there has to be an origin. In my family I am believed to be the origin although we cannot be sure since my father passed away before we knew about the genetic component. The second is that AVMs were underdiagnosed in the past due to lack of disgnostic tools as mentioned above. Also there are possibilities that the carriers were asymptomatic or did not have AVMs. The likelihood of being tested for HHT prior to the 1980’s seems very slim to me. Even now doctors are disseminating false information and denying people the right to make an INFORMED decision about whether or not to get tested. This leads me to my last point.
IT’S ONE BLOOD TEST TO DETERMINE WHETHER YOU MAY OR MAY NOT PASS A POTENTIALLY FATAL DISORDER TO FUTURE GENERATIONS. WHY NOT DO IT?
Christine, thanks so much for telling your story. Wow! Pretty unbelievable. I hope you all doing well now. Can I go to a regular dr to get the blood test or do I have travel to a special clinic? Thanks
Christine said:
As I read this thread I want to SCREAM! YES!!! It’s so frustrating.
AVMs are a vascular malformation and there are several genetic conditions that cause vascular malformations. It has been stated on this thread that these genetic conditions are rare but I believe that is FALSE information.
I cannot speak for any condition other than mine but please listen.
At the age of 13 I was diagnosed with an AVM. At the time my mother specifically asked the best neurosurgeons and neurologists in the state of CA if it was hereditary and they said no (ironically one of these drs also treated my daughter)
25 years later my youngest daughter has a seizure. Even with my history of AVMs the ER drs and on call neurologists said it was just a formality to admit my daughter for more testing. When I came back from lunch one day and my husband told me my daughter had an AVM I collapsed on the floor in tears. Not only one AVM but multiple AVMs. Next child tested has 2 AVMs in her brain and 1 in her lung. ALL 5 children test positive for HHT, Hereditary Hemorrhagic Telangiectasia.
1 in 5000 people have HHT. HHT is a defect in the gene that forms the arteries and veins so there can be AVMs anywhere in the body. This leads me to the diagnostic criteria and my personal observations.
Of my 5 HHT positive children
2 have frequent nosebleeds (one also has telangiectasies)
2 have cerebral AVMs
1 has pulmonary AVM (also has cerebral AVM)
1 has venous angioma
1 has telangiectasies (small red spots or mini AVMs on the skin surface or in mouth)
The one who has the visible telangiectasies is the eldest, now 19. She did not have any signs until age 14. She sctually had the spots checked by several doctors, none of whom identified it as a telangiectasia. She had nosebleeds as a child but they did not seem abnormal until recently, in the last 2 years.
I have no symptoms of HHT (other than AVM), neither do my parents, aunt or cousin.
Too many doctors are completely ignorant when it comes to this condition. At the hospital where my daughters were treated we met drs who were amazed by us because they had no idea it was hereditary. The doctors who do know about it are too quick to dismiss it because of it’s “rarity” or because of the diagnostic criteria.
Here are what I consider to be the problems of the diagnostic criteria as posted earlier on this thread.
1. NOSEBLEEDS, spontaneous and recurrent.
From the HHT.org website, symptoms such as nosebleeds often to not occur until 30’s or later. In my own family you see ony 2 of the 6 HHT positive individuals have ever had nosebleeds and those did not occur with any frequency until late teens in one of them.
2. TELANGIECTASES, multiple, at characteristic sites including lips, oral cavity, fingers and nose.
Same as above. These signs do not tend to show until mid life if at all. In my family only one of 6 has these visible lesions.
3. INTERNAL LESIONS such as: Gastrointestinal telangiectasia (with or without bleeding), Pulmonary AVM, Hepatic AVM, Cerebral AVM, Spinal AVM
These would not be discovered without testing. However, since the introduction of the CT and MRI there have been many more individuals diagnosed with AVMs. What used to be an extremely rare disorder is now becoming more common.
4. FAMILY HISTORY- a first degree relative with HHT according to these criteria.
The first flaw with this criteria is that there has to be an origin. In my family I am believed to be the origin although we cannot be sure since my father passed away before we knew about the genetic component. The second is that AVMs were underdiagnosed in the past due to lack of disgnostic tools as mentioned above. Also there are possibilities that the carriers were asymptomatic or did not have AVMs. The likelihood of being tested for HHT prior to the 1980’s seems very slim to me. Even now doctors are disseminating false information and denying people the right to make an INFORMED decision about whether or not to get tested. This leads me to my last point.
IT’S ONE BLOOD TEST TO DETERMINE WHETHER YOU MAY OR MAY NOT PASS A POTENTIALLY FATAL DISORDER TO FUTURE GENERATIONS. WHY NOT DO IT?
Sue Roth said:
Christine, thanks so much for telling your story. Wow! Pretty unbelievable. I hope you all doing well now. Can I go to a regular dr to get the blood test or do I have travel to a special clinic? Thanks
You must go to a geneticist to get the test done. Actually, a point I forgot to make is that a geneticist is the ONLY doctor qualified to tell a person whether or not they have HHT. If you have an AVM and anyone other than a geneticist tells you that a genetic condition is not what caused it then you are being given a misdiagnosis.
Hello Sue, all I know about AVM,s is what the drs have told me and they have said that they are not hereditary. I am the youngest of 6 children (5 living) and no one in our family or their families have had an AVM that we are aware of. I had an abdominal aneurysm 3 yrs ago, then another after the craniotomy which (thank heavens) disapeared. I believe that AVM’s appear before birth and most people never know about them. Like most others here, I had never heard of AVM’s until I had a brain scan. Hope this can be helpful, good luck and take care, Lesley.
The fact that you have multiple lesions in different locations lends to the argument that yours is a genetic condition. I suggest you do some research rather than trusting the obviously flawed information that you have received from your drs. Especially if you have children or nieces/nephews. Start with www.hht.org.
Lesley Skelton said:
Hello Sue, all I know about AVM,s is what the drs have told me and they have said that they are not hereditary. I am the youngest of 6 children (5 living) and no one in our family or their families have had an AVM that we are aware of. I had an abdominal aneurysm 3 yrs ago, then another after the craniotomy which (thank heavens) disapeared. I believe that AVM’s appear before birth and most people never know about them. Like most others here, I had never heard of AVM’s until I had a brain scan. Hope this can be helpful, good luck and take care, Lesley.
Yes, I think they are. My grandma had quite a few strokes & my mother & uncle had strawberry birthmarks, (which are also AVM’s close to the skin) The doc my mom has now, says she is at risk of a stroke because she has small blood vessells in her brain. The doctor that did my proton beam at Mass. General, Dr. Kjellburg, said it could be genetics or just a quirk of nature!
Chris
You are so right about how you feel about all this. The moment I met my first surgeon…his first words were, I would like to get your mothers medical records. I about passed out…thinking…nice to meet you too. Being I am adopted I had no input for him, however he let me know he was positive of where it came from (I didn’t understand it all, but he explained it anyway). I finally made contact with my biological
family and yes, they have the headaches as well…grandmother - mother - brother and myself. I am the only one in which they actually found the AVM. About the only other part of it I can remember is the surgeon had told me was that I had a rare gene. So here I am 26 years later and guess what…I go back Sept 14th to see how I am doing after stereoradiation (or however it is spelled). Ohhhhhhh the fun just never ends.
Christine said:
As I read this thread I want to SCREAM! YES!!! It’s so frustrating.
AVMs are a vascular malformation and there are several genetic conditions that cause vascular malformations. It has been stated on this thread that these genetic conditions are rare but I believe that is FALSE information.
I cannot speak for any condition other than mine but please listen.
At the age of 13 I was diagnosed with an AVM. At the time my mother specifically asked the best neurosurgeons and neurologists in the state of CA if it was hereditary and they said no (ironically one of these drs also treated my daughter)
25 years later my youngest daughter has a seizure. Even with my history of AVMs the ER drs and on call neurologists said it was just a formality to admit my daughter for more testing. When I came back from lunch one day and my husband told me my daughter had an AVM I collapsed on the floor in tears. Not only one AVM but multiple AVMs. Next child tested has 2 AVMs in her brain and 1 in her lung. ALL 5 children test positive for HHT, Hereditary Hemorrhagic Telangiectasia.
1 in 5000 people have HHT. HHT is a defect in the gene that forms the arteries and veins so there can be AVMs anywhere in the body. This leads me to the diagnostic criteria and my personal observations.
Of my 5 HHT positive children
2 have frequent nosebleeds (one also has telangiectasies)
2 have cerebral AVMs
1 has pulmonary AVM (also has cerebral AVM)
1 has venous angioma
1 has telangiectasies (small red spots or mini AVMs on the skin surface or in mouth)
The one who has the visible telangiectasies is the eldest, now 19. She did not have any signs until age 14. She sctually had the spots checked by several doctors, none of whom identified it as a telangiectasia. She had nosebleeds as a child but they did not seem abnormal until recently, in the last 2 years.
I have no symptoms of HHT (other than AVM), neither do my parents, aunt or cousin.
Too many doctors are completely ignorant when it comes to this condition. At the hospital where my daughters were treated we met drs who were amazed by us because they had no idea it was hereditary. The doctors who do know about it are too quick to dismiss it because of it’s “rarity” or because of the diagnostic criteria.
Here are what I consider to be the problems of the diagnostic criteria as posted earlier on this thread.
1. NOSEBLEEDS, spontaneous and recurrent.
From the HHT.org website, symptoms such as nosebleeds often to not occur until 30’s or later. In my own family you see ony 2 of the 6 HHT positive individuals have ever had nosebleeds and those did not occur with any frequency until late teens in one of them.
2. TELANGIECTASES, multiple, at characteristic sites including lips, oral cavity, fingers and nose.
Same as above. These signs do not tend to show until mid life if at all. In my family only one of 6 has these visible lesions.
3. INTERNAL LESIONS such as: Gastrointestinal telangiectasia (with or without bleeding), Pulmonary AVM, Hepatic AVM, Cerebral AVM, Spinal AVM
These would not be discovered without testing. However, since the introduction of the CT and MRI there have been many more individuals diagnosed with AVMs. What used to be an extremely rare disorder is now becoming more common.
4. FAMILY HISTORY- a first degree relative with HHT according to these criteria.
The first flaw with this criteria is that there has to be an origin. In my family I am believed to be the origin although we cannot be sure since my father passed away before we knew about the genetic component. The second is that AVMs were underdiagnosed in the past due to lack of disgnostic tools as mentioned above. Also there are possibilities that the carriers were asymptomatic or did not have AVMs. The likelihood of being tested for HHT prior to the 1980’s seems very slim to me. Even now doctors are disseminating false information and denying people the right to make an INFORMED decision about whether or not to get tested. This leads me to my last point.
IT’S ONE BLOOD TEST TO DETERMINE WHETHER YOU MAY OR MAY NOT PASS A POTENTIALLY FATAL DISORDER TO FUTURE GENERATIONS. WHY NOT DO IT?
Julie said:
You are so right about how you feel about all this. The moment I met my first surgeon…his first words were, I would like to get your mothers medical records. I about passed out…thinking…nice to meet you too. Being I am adopted I had no input for him, however he let me know he was positive of where it came from (I didn’t understand it all, but he explained it anyway). I finally made contact with my biological
family and yes, they have the headaches as well…grandmother - mother - brother and myself. I am the only one in which they actually found the AVM. About the only other part of it I can remember is the surgeon had told me was that I had a rare gene. So here I am 26 years later and guess what…I go back Sept 14th to see how I am doing after stereoradiation (or however it is spelled). Ohhhhhhh the fun just never ends.
Christine said:As I read this thread I want to SCREAM! YES!!! It’s so frustrating.
AVMs are a vascular malformation and there are several genetic conditions that cause vascular malformations. It has been stated on this thread that these genetic conditions are rare but I believe that is FALSE information.
I cannot speak for any condition other than mine but please listen.
At the age of 13 I was diagnosed with an AVM. At the time my mother specifically asked the best neurosurgeons and neurologists in the state of CA if it was hereditary and they said no (ironically one of these drs also treated my daughter)
25 years later my youngest daughter has a seizure. Even with my history of AVMs the ER drs and on call neurologists said it was just a formality to admit my daughter for more testing. When I came back from lunch one day and my husband told me my daughter had an AVM I collapsed on the floor in tears. Not only one AVM but multiple AVMs. Next child tested has 2 AVMs in her brain and 1 in her lung. ALL 5 children test positive for HHT, Hereditary Hemorrhagic Telangiectasia.
1 in 5000 people have HHT. HHT is a defect in the gene that forms the arteries and veins so there can be AVMs anywhere in the body. This leads me to the diagnostic criteria and my personal observations.
Of my 5 HHT positive children
2 have frequent nosebleeds (one also has telangiectasies)
2 have cerebral AVMs
1 has pulmonary AVM (also has cerebral AVM)
1 has venous angioma
1 has telangiectasies (small red spots or mini AVMs on the skin surface or in mouth)
The one who has the visible telangiectasies is the eldest, now 19. She did not have any signs until age 14. She sctually had the spots checked by several doctors, none of whom identified it as a telangiectasia. She had nosebleeds as a child but they did not seem abnormal until recently, in the last 2 years.
I have no symptoms of HHT (other than AVM), neither do my parents, aunt or cousin.
Too many doctors are completely ignorant when it comes to this condition. At the hospital where my daughters were treated we met drs who were amazed by us because they had no idea it was hereditary. The doctors who do know about it are too quick to dismiss it because of it’s “rarity” or because of the diagnostic criteria.
Here are what I consider to be the problems of the diagnostic criteria as posted earlier on this thread.
1. NOSEBLEEDS, spontaneous and recurrent.
From the HHT.org website, symptoms such as nosebleeds often to not occur until 30’s or later. In my own family you see ony 2 of the 6 HHT positive individuals have ever had nosebleeds and those did not occur with any frequency until late teens in one of them.
2. TELANGIECTASES, multiple, at characteristic sites including lips, oral cavity, fingers and nose.
Same as above. These signs do not tend to show until mid life if at all. In my family only one of 6 has these visible lesions.
3. INTERNAL LESIONS such as: Gastrointestinal telangiectasia (with or without bleeding), Pulmonary AVM, Hepatic AVM, Cerebral AVM, Spinal AVM
These would not be discovered without testing. However, since the introduction of the CT and MRI there have been many more individuals diagnosed with AVMs. What used to be an extremely rare disorder is now becoming more common.
4. FAMILY HISTORY- a first degree relative with HHT according to these criteria.
The first flaw with this criteria is that there has to be an origin. In my family I am believed to be the origin although we cannot be sure since my father passed away before we knew about the genetic component. The second is that AVMs were underdiagnosed in the past due to lack of disgnostic tools as mentioned above. Also there are possibilities that the carriers were asymptomatic or did not have AVMs. The likelihood of being tested for HHT prior to the 1980’s seems very slim to me. Even now doctors are disseminating false information and denying people the right to make an INFORMED decision about whether or not to get tested. This leads me to my last point.
IT’S ONE BLOOD TEST TO DETERMINE WHETHER YOU MAY OR MAY NOT PASS A POTENTIALLY FATAL DISORDER TO FUTURE GENERATIONS. WHY NOT DO IT?
Hi, I’m new and not sure how this board works. I am an AVM survivor. I had 2 craniotomies in May 1997. My sister is also an avm survivor. She had a craniotomy in June 1997. We were told this was a fluke…the chances were 1 in 12 million…lucky us!
Shalon said:
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
We have members on the board who do have multiple family members with AVM’s.
Shalon
Thank you all for sharing your FAMILY stories. I’ve thought since last year when my son was found to have a cerbal AVM it was genetic and now after reading this im convinced. My mother and i both have siezures. We all have strawberry birthmarks. My mother has intestine issue in which have bleed. Im going to talk with my mom and we will get tested for HHT. This whole thing is been like putting a 1000 piece puzzle together so again thank you for sharing
Sarah,
I am glad you decided to get yourself tested! I understand what you mean about the million pieces 
I am still working on my jigsaw
Take care, and god bless~!
sarah said:
Thank you all for sharing your FAMILY stories. I’ve thought since last year when my son was found to have a cerbal AVM it was genetic and now after reading this im convinced. My mother and i both have siezures. We all have strawberry birthmarks. My mother has intestine issue in which have bleed. Im going to talk with my mom and we will get tested for HHT. This whole thing is been like putting a 1000 piece puzzle together so again thank you for sharing
So I too was told by doctors most doctors that they are not hereditary, but one of them quite clearly said he believed that they were. Interestingly as soon as I add that I have an identical twin the tune changes and every doctor want her to at least get an MRI. She has yet to do so, she saw how miserable I was in ICU after my brain surgery and told my mom she couldn’t go thru it even if they found one. I think the jury is still out. In addition my younger sister is a nurse and has personally seen a few women come into the ER with brain hemorrhages who also said their sisters has an AVM which is how they knew to got to ER (it took me many hours). 3rd and youngest sister just finished nursing school and emailed me a paper about female siblings and AVMs. All my sisters experience worse migrants that I ever did before all this oddly, and at least two of them are talking to docs to try to get MRIs he
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!
Hi There…Yes AVM’s are hereditary…My name is Sherri I have capillary malformations my daughter Madison has an AVM in her facial region. We tested postive for the RASA1 gene. My sister also has a large AVM on her back, my other sister has one in her leg. They most definately can be hereditary and you can most definately pass them on to your children. However there are certainly the traditional AVM’s that are not hereditary and to my knowledge so far as of 2010 only 52 families have tested positve for the RASA1 gene that causes this…If you have questions let me know. Sherri
Thanks for the info. I amnot sure I understand the difference between the AVM’s you talked about as being hereditary and certain traditional AVM’s that are not. Did you see a geneticist to get tested? Also I saw your comment about Maddy having a lot of pain the past couple of weeks. I pray you find some answers and the help you need. I am so sorry your family is going through this and especially for Maddy’s pain and discomfort.
Maddysmom said:
Hi There…Yes AVM’s are hereditary…My name is Sherri I have capillary malformations my daughter Madison has an AVM in her facial region. We tested postive for the RASA1 gene. My sister also has a large AVM on her back, my other sister has one in her leg. They most definately can be hereditary and you can most definately pass them on to your children. However there are certainly the traditional AVM’s that are not hereditary and to my knowledge so far as of 2010 only 52 families have tested positve for the RASA1 gene that causes this…If you have questions let me know. Sherri
I just found out last night that a great uncle, blood-related, had a stroke about 15 years ago and for the 8 or 9 months leading up to it had headaches. Which sounds like exactly like my Avm symptoms!!! And my uncle died as a child from drowning while having a seizure, so I think there is a predisposition in some families for this!
I was told by my neurologist when diagnosed that AVM’s are NOT hereditary. He informed me that there are only 2 major ways to acquire AVM’s, one is through a malformation of the fetus during pregnancy and the other is through immense physical trauma (I was diagnosed with an AVM of the brain but he said it holds true for others who have them in other areas of their body). Just my two cents 
Hi Sue…yes we had genetic testing and it came back positve for the rasa 1 gene…it took a year and a half to get the results which was tested in germany i live in boston in the united states…yes its positive…yes its hereditary…and yes multiple family members have these avms all in different locations…dr. mulliken in boston ma was the first doctor to link these avm’s genetically…not all avms are herediatry in fact he has only seen 52 families test positive in the entire world…rare but yes it can happen…i hope this helps
Sue Roth said:
Thanks for the info. I amnot sure I understand the difference between the AVM’s you talked about as being hereditary and certain traditional AVM’s that are not. Did you see a geneticist to get tested? Also I saw your comment about Maddy having a lot of pain the past couple of weeks. I pray you find some answers and the help you need. I am so sorry your family is going through this and especially for Maddy’s pain and discomfort.
Maddysmom said:Hi There…Yes AVM’s are hereditary…My name is Sherri I have capillary malformations my daughter Madison has an AVM in her facial region. We tested postive for the RASA1 gene. My sister also has a large AVM on her back, my other sister has one in her leg. They most definately can be hereditary and you can most definately pass them on to your children. However there are certainly the traditional AVM’s that are not hereditary and to my knowledge so far as of 2010 only 52 families have tested positve for the RASA1 gene that causes this…If you have questions let me know. Sherri