AVM Awareness in Canada?

After not being on this site for a long time (since my embolization actually, I seem to forget about having my AVM until I hear more news about it) I have read a lot of people’s stories. Of course, I am amazed at what everyone on this site has gone through, and how everyone is so positive. It truly is inspiring.


However, I have been looking everywhere (on and off this site), and I have not seen an event located in Canada dedicated to raising awareness of AVM's. I very well may be missing something, but I just can't seem to find anything. Of course, Canada has a much smaller population than the States, and if you figure out the math, the number of people in Canada with AVM's is probably pretty small, but why can't we have something to support our cause?

For those of you who have or have not read my story - my experience has not been nearly as severe as many survivors on this site. But I can remember walking out of my Neurologist's office catching only a few words - AVM, tangled veins in my brain, seizures, bleeding, surgery (my Neurologist talks very fast and has a very thick accent, my mother takes notes during my appointment now). Pretty heavy stuff for a 17 year old girl whose previous problem had included a lot of studying for an Advanced Function test. I can remember going back to school and having a break down. I met with each of my friends and broke the news (almost every high school student had heard about my grand mal seizure at my high school hockey game) and cried for almost an entire day. Each time somebody asked me what happened, I had to explain for nearly 10 minutes about what was going on, leaving many people confused, and very shocked. Of course, no one had ever heard of an AVM before, and could not ever fathom the idea of an angiogram.

After the initial shock passed, question upon question flowed through my brain - and obviously, all I could think about was the worst. What if I have to get brain surgery? What if there are complications? What if I have a bleed? Will I ever drive again? Will I ever get the full experience of my 19th birthday? Will I have more seizures? Will I ever play hockey again? Will I get into University? (The latter being quite drastic, I know.) The only option I had was to research my condition on the internet, leaving me even more terrified than I was before.

Anyways, now that I part way through my treatment, all I can thing about is other people who are being diagnosed with this thing called an "AVM." What if they don't find this site? What if they are even more drastic than myself? How are they feeling? No hospitals I have been to have any type of information on AVM's, so I am thinking that most survivors are left to do research like myself. What's the harm in having a few brochures at the Neurologists office? The MRI waiting area? The Neurosurgeons office?

All I want to do is spread the word. My wish is that nobody has to search for the information regarding their diagnosis. That they are able to access information at the location that they are receiving help. That no one has to go through this experience in the dark.

So that's my rant. If anyone knows of anyone or any place that can help me out with this, let me know!

That sounds nearly like me own experience. I am 18 years old, so about the same age and I have an AVM,too. I am from Switzerland, and here we have to write a paper for the graduation. And I want to write about AVM, I want to do a comparison between different people with AVM and their experiences. Would you agree with answering me some questions about your experiences etc? It would help me really and sorry if I have made some spelling mistakes.:slight_smile:

and also to all the other people, who read my comment. If someone else would agree to answer me some questions. Please write me, add a comment or write me an e mail (■■■■■■■■■■■■■■■■■■)

This sounds a lot like me. I luckily have not have seizures but about the neurologist. She is very nice but she is from Hungary and it is difficult to understand, especially when your told you have something that you have never had before. I understand it is rare but I agree there should be more awareness. Most of what I know about AVM is from the internet. And I still sometimes think of the worse. Even though my AVM is pretty mild and has not even bled I still am terrifying myself with surgery bleeding and missing school. I’m hoping if I have to get a treatment it will be during the summer so I do not have to miss a semester of college.

Anyway, I think I got way off topic, haha. My apologies. I am from the US so I am not aware of any canadian awareness programs, however if I come across anything online, you will be the first to know. TRY to keep positives thoughts. I know this can be hard but just try your best.
Alyssa