MovieChat Forums > Extraordinary Measures (2010) Discussion > disorder?

disorder?

posted 14 years ago by tyedog3
2 replies | jump to latest

Just out of curiosity what genetic disorder do the kids have? (sorry if this has already been covered, I tend to overlook the obvious).

~Goodbye, Johanna.You're gone,and yet you're mine. I'm fine, Johanna,I'm fine.~

[–] dj_mrt_2000 14 years ago

It is called Pompe disease (it is a genetic deficiency of a certain enzyme in the body and it is deadly in infants and young children) - one of those rare diseases that pharmaceutical industry does not do any research on because there is no profit in the cure. I will definitely see this movie, just to help in making sure that the disease gets some publicity. It is also great the children depicted in the movie are still alive.

[–] scout197 14 years ago

Actually, there is considerable research being done in the field. Research for Pompe disease falls under the FDA's Orphan Drug Program. Treatment is available for children under the age of 17. For adults, there are no options if they are not part of a clinical trial. There is no cure for this illness.