Can you remember how you felt when you learned you had an AVM? If you felt like I did you felt alone. You felt scared. Even with caring people around you knew they really couldn't understand this thing none of you had ever heard of before. Now remember how you felt when you found this site full of people like you. People who knew exactly what you are going through or having been through it themselves. Don't you wish you were handed a pamphlet with www.avmsurvivors.org on it? I personally spent months feeling isolated and alone before I found this place. Ultimately wouldn't have been amazing to have had someone walk into the room to say I am an AVM survivor here to hold your hand and support you through this? How do we make this happen? Anyone with medical background or insight please share your input. I want to see this happen for all the people out there that haven't met their AVMs. Let's find away to keep them from walking blind and feeling alone.
I've often thought about this too Holly. I had heard of AVMs before my bleed (didn't know I had one) but only very minimal info. My aunt had one that bled several years before mine. It took me a good while to find this site. I was thinking about getting some simple information sheets printed up and bringing them to the Rehab unit where I started my recovery. I was one of two women in that unit at the time that had had AVM bleeds. I think one would have to get permission from the hospital but I think as long as the information doesn't include any info. on treatments or statistics, etc. it would be alllowed. Just the name of the webiste and the part about "we're AVM survivors here for your support". I also thought about having them put in my neurologists and neruosurgeons offices. I think I may look further into this and see what I can do.
Hi Holly! Michele has created something we could leave at our Neuro doc/rehab centers to let people with AVM's know there is the AVM Survivor Network available. She is going to send me a copy and once I get it, I'm going to ask Ben if there is a way we can have members take copies to their doc/rehab centers so that people that first find out that they have an AVM now a great site of great people that can help them. Keep the Faith! Hopefully, we can creat information that will not leave AVM'rs walking blind and feeling alone anymore.
I think this is a great recommendation Holly. Louisa, let me know if and when you get the pamphlet and if I can help in any way. And thanks for the info Trish, it's always helpful to know what'll get approved. Hopefully, that'll speed up things. We can and should work on all sides of the awareness thing. Again, GREAT idea.
Until I found this site, I never considered myself a survivor. I never understood why some people thought I was amazing -- still laughing after everything I have been thru. . .
But this site -- talking with other people who understand what I have been and still am going thru. . . What's that word -- aphesia!!! I don't know the word I'm looking for! It's been a blessing!! Thank you to everybody!! Happy Thanksgiving -- I know I have alot to be thankful for!!