I don’t often talk about my arterio venus malformation (AVM) condition. Here on my website, it gets a brief mention in the About Me page and that’s pretty much it.
I think this is probably because I’ve had it since birth, it became active when I was 6 or 7, and I have lived with it ever since. Complications from the AVM lead to two amputations (first my thumb, then my hand) and I guess this limb loss has been my focus ever since.
I was always lead to believe that AVM was quite rare. That’s why I was quite surprised to find the Ben’s Friends & AVM survivors network. AVM, it seems, isn’t so rare.
For me it was kind of enlightening to read of others with similar pains, complications, losses and treatment experiences. I’m not the only one!
I am so in love with the internet and its ability to bring together so many people. Whether we’re brought together through suffering or triumph, knowing that there are others out there that understand what you’re going through is quite therapeutic.
I don’t know why I didn’t look sooner for AVM groups, but now that I found it, I’m wishing it had been around when I was a kid. Not only for me, but for my mother too. I’ve not yet had a child, so I can only imagine what she went through during my multiple childhood surgeries and those days when nothing stopped the pain. I’m sure she would have loved to been able to speak to other parents and know she wasn’t alone.
Anyways, this isn’t meant to be a woe is me post, I wanted to share the Ben’s Friends & AVM survivors network with you and also tell you about Lion Snaps. Lion Snaps creates these cute ribbons, with the proceeds going to the AVM Survivors Network. You can find Lion Snaps on Facebook.
Lion snaps were designed to be worn on your shoes to show support to those who are recovering from AVM/VM surgerys. To also remind us that recovery is one step at a time. I think of it as putting your best foot forward and to always think of others and not just yourself.