There is one thing I wish for: I would like to meet someone with ROHHAD over the age of 15! I want to talk to an adult with ROHHAD - I want to know what life it like after age 15. We can't find anyone over 15 and neither can our doctors. So what happens after that????????
After 45 years of a disease that has only claimed 50 or so kids --- you'd think you'd hear of one making it past 15 and at least a doctor could find out how they are living now.