So sorry to here about your brother.Our prayers will be with him . My boyfriends brother found out he has it to. But i would like to know the whole name of what it is called . He tells us that it is called ehe .If you know the name please let me know. I live in Tennessee and the doctors at vanderbilt said it has only been 19 cases of it and his is number 20 they don't really know how to treat it. he has it in his spline,kidney and liver.They are looking to take out the one kidney and spline and try to get all of it in his liver that they can. They haven't made up there minds yet. please let me know if you know anything about it thanks. Trisha