Disorders Associated with AVM's

I was wondering if anyone knows if the following disorders come hand in hand with AVM’s: HHT, Hemophilia, von Willebrans, Osler-Weber-Rendu Syndrome, etc. (Or of any other disorders that are associated with AVM’s.)
My question arises because all of the above have been suggested causes for my AVM’s and I wonder if that is possible?
Anyone that has any information regarding my question would greatly assist the easing of my mindset (hopefully).
Thanks =]

Hi Casandra

the quickest answer is yes. Hht, osler web, etc all have AVM components associated with that particular syndrome. Do they cause AVM’s or are you just more likely to have one… I don’t know the answer. I do know of a website that describes all of these in detail but have it saved on my laptop not iPhone! So I’ll have to get back to you on that. However I would suggest sending a message or post at Maddysmom’s page as her family has one of the syndromes (hht I think) with Maddy having in her arm, her aunt on her shoulder I think, and if I remember correctly more famly members as well with some manifestation!
But I promise I will look up the info I have and pass it along as well!

I am type O+. Thank you for your response. You are in my prayers Aaron. I hope that you never do give up you own personal hope. My hope is that there will someday be a cure and that I, as well as those such as you experiencing similar situations to my own will be able to live long and fulfilling lives. We each have our own purpose and I believe we know in our hearts what it is! God gave us those desires in our hearts to please us, not to tease us!! I wish you well and please do keep in touch with me!

AARON PHILLIPS said:

Hi Cassandra, I think I can help you with above questions. I been a pharmacist for 22 years and have dispensed quite a bit of Humate (factor viii + von willebrands). I kinda burned out right now (answered alot of questions tonight) but I get back to you. Oh,what is your blood type? If it abo or plain o that might help.
My brain is only good for about 4 hours since my avm rupturd and I had another bleed in my parietal lobe just last year. I hope the 3rd one,if it comes,is strike third. (haha)

But I think really that my question is, is it possible to have ALL of these diseases at ONCE? I do appreciate your response very much. Any information that you can provide is amazing to me. I have been dealing with this for thirteen + years but I am still unfamiliar with my own case. I’d like it if I were able to have more information on my own situation and that of similar situations by others. Thank you so much for your response and I hope that I hear from you again soon =]

Shalon said:

Hi Casandra

the quickest answer is yes. Hht, osler web, etc all have AVM components associated with that particular syndrome. Do they cause AVM’s or are you just more likely to have one… I don’t know the answer. I do know of a website that describes all of these in detail but have it saved on my laptop not iPhone! So I’ll have to get back to you on that. However I would suggest sending a message or post at Maddysmom’s page as her family has one of the syndromes (hht I think) with Maddy having in her arm, her aunt on her shoulder I think, and if I remember correctly more famly members as well with some manifestation!
But I promise I will look up the info I have and pass it along as well!

Ok, well I do think it is possible to have all of these, as they are all related. The fact that you have HHT is pretty much the reason you have AVM’s. That is one of the major manifestations of HHT. And really if you do have HHT someone else in your family should as well. It is one of the genetically linked causes of AVM’s. Most people just have the AVM randomly happen during fetal development instead of as part of a syndrome like HHT. I mispoke when I mentioned Maddy having it in her arm (don’t know how I typed that) as she has it in her jaw and cheek and such just like we do.

There are genetic tests you can have done to once and for all have an actually diagnosis of HHT, OWR, etc. Definitely look into getting those tests done. I think it would help you put your mind at ease.

As far as do you have “all” of these. Well I am totally not qualified to answer that although it seems unlikely to me. So many of the manifestations of these conditions overlap that it seems like something that is being blamed on one condition may actually be related to another. You know? Like maybe all of your symptoms can be explained by HHT and not adding all the rest in. But you won’t know until you get the genetic tests done.

However, having said that, even if you do have ALL of those, I’m not sure that you are at any more risk than someone diagnosed with only one AVM related syndromes. I am no expert at how they all work together but it just seems unlikely that the risks go up exponentially if at all.

And here is my MAJOR piece of advise. Call all of your old docs and get your treatment reports. It will definitely be a little medical mumbo jumbo to sort through and you will probably need a dictionary close by…but it is one of the best ways to educate yourself about AVM’s in general, and of yours specifically. This is what I did a few years ago when I was looking into treatment options before finally deciding on Yakes. And it has helped so many times. I feel confident when I talk to the doctors about what is going on and they now talk to ME instead of my parents or husband or whatever. I took control of my condition and am now leading it with knowledge instead of blindly following the traumatic bleeding episodes and such. I really can’t explain the sense of power that it gave me over this condition. But I feel much better prepared to take care of myself, to make the right decisions for treatment, and to get the info I need from doctors. So please be sure to do this and it will absolutely help you with easing your mind!!!

Cassandra Behar said:

But I think really that my question is, is it possible to have ALL of these diseases at ONCE? I do appreciate your response very much. Any information that you can provide is amazing to me. I have been dealing with this for thirteen + years but I am still unfamiliar with my own case. I’d like it if I were able to have more information on my own situation and that of similar situations by others. Thank you so much for your response and I hope that I hear from you again soon =]


Shalon said:
Hi Casandra

the quickest answer is yes. Hht, osler web, etc all have AVM components associated with that particular syndrome. Do they cause AVM’s or are you just more likely to have one… I don’t know the answer. I do know of a website that describes all of these in detail but have it saved on my laptop not iPhone! So I’ll have to get back to you on that. However I would suggest sending a message or post at Maddysmom’s page as her family has one of the syndromes (hht I think) with Maddy having in her arm, her aunt on her shoulder I think, and if I remember correctly more famly members as well with some manifestation!
But I promise I will look up the info I have and pass it along as well!

Thank you so much Shalon for the great advice!! I will be having my new Doctors run new tests on me and Friday I requested my medical records from Yakes, they should be here in 7-10 business days. I am very proud of you for taking control of your life and situation… It is what I’ve been trying to do now since I turned 18! Almost three years later I am finally getting a grasp on things! Again thank you for your words and keep in touch with me!

Shalon said:

Ok, well I do think it is possible to have all of these, as they are all related. The fact that you have HHT is pretty much the reason you have AVM’s. That is one of the major manifestations of HHT. And really if you do have HHT someone else in your family should as well. It is one of the genetically linked causes of AVM’s. Most people just have the AVM randomly happen during fetal development instead of as part of a syndrome like HHT. I mispoke when I mentioned Maddy having it in her arm (don’t know how I typed that) as she has it in her jaw and cheek and such just like we do.

There are genetic tests you can have done to once and for all have an actually diagnosis of HHT, OWR, etc. Definitely look into getting those tests done. I think it would help you put your mind at ease.

As far as do you have “all” of these. Well I am totally not qualified to answer that although it seems unlikely to me. So many of the manifestations of these conditions overlap that it seems like something that is being blamed on one condition may actually be related to another. You know? Like maybe all of your symptoms can be explained by HHT and not adding all the rest in. But you won’t know until you get the genetic tests done.

However, having said that, even if you do have ALL of those, I’m not sure that you are at any more risk than someone diagnosed with only one AVM related syndromes. I am no expert at how they all work together but it just seems unlikely that the risks go up exponentially if at all.

And here is my MAJOR piece of advise. Call all of your old docs and get your treatment reports. It will definitely be a little medical mumbo jumbo to sort through and you will probably need a dictionary close by…but it is one of the best ways to educate yourself about AVM’s in general, and of yours specifically. This is what I did a few years ago when I was looking into treatment options before finally deciding on Yakes. And it has helped so many times. I feel confident when I talk to the doctors about what is going on and they now talk to ME instead of my parents or husband or whatever. I took control of my condition and am now leading it with knowledge instead of blindly following the traumatic bleeding episodes and such. I really can’t explain the sense of power that it gave me over this condition. But I feel much better prepared to take care of myself, to make the right decisions for treatment, and to get the info I need from doctors. So please be sure to do this and it will absolutely help you with easing your mind!!!

Cassandra Behar said:
But I think really that my question is, is it possible to have ALL of these diseases at ONCE? I do appreciate your response very much. Any information that you can provide is amazing to me. I have been dealing with this for thirteen + years but I am still unfamiliar with my own case. I’d like it if I were able to have more information on my own situation and that of similar situations by others. Thank you so much for your response and I hope that I hear from you again soon =]

Shalon said:
Hi Casandra

the quickest answer is yes. Hht, osler web, etc all have AVM components associated with that particular syndrome. Do they cause AVM’s or are you just more likely to have one… I don’t know the answer. I do know of a website that describes all of these in detail but have it saved on my laptop not iPhone! So I’ll have to get back to you on that. However I would suggest sending a message or post at Maddysmom’s page as her family has one of the syndromes (hht I think) with Maddy having in her arm, her aunt on her shoulder I think, and if I remember correctly more famly members as well with some manifestation!
But I promise I will look up the info I have and pass it along as well!