Is there anyone out there that knows of someone or is one of the very unlucky few world wide
that have this? It has been described as Vascular malformations, heamangioma's etc.. but it
is in a cla** of it's own. I am one of the few that has it and it has never been a problem to
me until now. I have breast cancer and have to have a breast removed. They need to cut
through the malformation to remove the breast. Extremely high risk of bleeding out. I am
trying to find any info on bleeding in surgery from this disorder, but there is nothing out
there. I have two small children, so am a little down about my prognosis right now. Help if
you can.

Odie