I hope that doctors, researchers, pharmaceutical companies listen and learn from the Pompe people, who know their bodies best and that they find a cure that will not only help Pompe but all other lysosomal storage disorders.
That every consultation starts with a personal of evaluation of fatigue, pain etc so when the patient who has always being saying they are fine and giving themselves a 1 or a 2, when they say they are in pain and give themselves a 9, that the medical team will listen and react. It should be worldwide, systematic and interdisciplinary. It costs nothing and it would improve communication and interpretation between patient and doctor.
H ealthy
O pportunities
P ositive
E xpections
H uman
O pinion
P ersonalised
E valuations
