AVM Survivors Network

14 month old


I’m curious to know if anyone has a situation like my daughters. She’s a 14month old with an AVM in her finger that has a BRAF genetic driver. They’ve introduced Mekinist chemotherapy drug to us and we really want to avoid this route but none of the procedures seem like a clear path. Any thoughts??


Hi there! How is your daughter doing? My son has avm in his left middle finger. It’s been a journey. I absolutely understand the frustration and confusion on this crazy “birth mark”. If you ever want to chat about anything. I’m here. It can feel like you’re all alone at times…just know you’re not.



better remove it completely. I have avm since birth too in my scalp. if your daughter’s avm is on finger, it should be easier to remove while it is still small. it will be complicated to leave it and if it becomes enlarge, the finger is prone to accident than any other body parts.