This has been our life for the last two years. At least giving the demon a name helps us deal with it. We can seek support from others who suffer from the same issues.
The problem is though, what you have to go through:
1) getting the diagnosis
2) dealing with the illness itself
3) educating the people around you about it.
4) that there is no cure.
More needs to be done. More research, more assistance, more relief, more education.