Anyone with AVM and MAP2K1 mutation?
Hello :) (sorry English not first language)
I have been diagnosed with Arterioveinous Malformation and MAP2K1 mutation on my right foot in 2024. I have been on thalidomide and tramenitib (mekinist) and both don’t work on the pain I feel every day in my foot.
I’m lost, scared and I feel utterly alone: I have never met anyone with the same disease as I have, no one I can ask questions about a patient experience with AVM or MAP2K1 mutation. If anyone could share their experience, that would help me a lot.
Also, my doctors told me that amputation could be used at last resort. Has anyone faced this situation with this disease and could share about it?
I’m desperate with my situation, it’s gotten as painful mentally as physically and I just feel left alone by doctors who can’t help me.