So this is my first post

So hi everyone. I’m really glad I joimed this network because I don’t know a lot of people who have AVM. They say that 300,000 Americans have it, but at the same time, at times I feel like the only person suffering from it.

The stroke I have suffered from had really bad timing-- after my high school graduation and before attending the University at Buffalo where I was set to pursue Pharmacy.

Whilst my friends in college were making friends and partying, simply enjoying college life… I was at two centers for rehabilitation, namely Mt. Sinai Hospital in Manhattan and Queens Nassau Rehab and Nursing Center in Queens.

Sometimes, I wish they had detected the AVM earlier in hopefully. I sincerely wish physicians could check for malformations in blood vessels in children and young adults. I don’t want another person to randomly have a stroke just when their life is about to begin. I don’t anybody to follow in my footsteps.

That is bad timing… Not that there is ever good timing for your brain to start bleeding. I agree, it would be great if there were more ways of detecting AVMs in the earlier stages before they start causing all sorts of major problems. The statistics floating around in the medical community are based on AVMs that have been diagnosed, but doesn’t include however many have not been, or maybe never will be detected.

Welcome to the forum!

I’m sorry that a time that is supposed to be joyful hasn’t turned out that way.

Take care,


I can relate to your words. My son was diagnosed in Gr. 12 and when all his friends were going off to university and were so excited, he could not and although this doesn’t seem too important considering what we were dealing with, at the time it was SO sad and difficult for him. You are right that you should not have to be dealing with this at your age. But Jillian, just remember that you have an insight into life that few people have and for the rest of your life, you will be so strong. You need to fight for your life now and it will all mean so much more later and you will be able to help others SO much.

Easy for me to say, right? Well, somehow, you need to find some tiny silver lining in this. That is the only thing that helps me from sometimes being really angry that this has happened to my son just as he is starting his independent life.
I really hope you have good family and friend support in this battle. You are not alone in this but I agree that one of the hardest things in dealing with this condition is that you DO feel alone and isolated especially when you are so young and it is so complicated to explain to others.
My thoughts are with you and keep up your fight for wellness.

Thank you everyone for your kind words. I really appreciate it.