just found out bf has a rare disease???

GOOD Day to everyone! This may seem a little weird and even surprising but just recently about a couple of days ago foud out my life partner/bf has a rare disease...It was accidentally discovered after a vehicle accident he was in...It is called chronic granulotous?? Something like that...AND I started reading up on it and can't understand how in the world his doctor's missed that all his life?! He's around my age and he was never diagnosed before??!! I have tried to ask his doctors to recheck and reevaluate but no response...Not only that but when we tried to bring it up with his parents they were like they're crazy! SO no help from anyone on what to do with this situation...If anyone can give me more information on this disease I would appreciate it!