What is the life expectancy of someone with ROHHAD?

I discovered the name of this rare disease on Christmas Eve, 2017. The description of its onset and progress brought tears to my eyes, because it was exactly what I went through as a child, beginning somewhere during my sixth year of life. ROHHAD was unheard of then, and I was diagnosed with Rheumatic Fever and put on bedrest and penicillin for a year-and-a-half. But I had each and every symptom of ROHHAD, and continue to have symptoms to this day. I am 65 years old.
I have read that ROHHAD takes the lives of approximately 60% of the children who are diagnosed with it, and have been wondering where the other 40% - the ones who somehow survived - where they are today? Because I believe I am one of them, and I believe there are more out there like me. I also believe that I (and they) may have something valuable to contribute in the unraveling of how the disease behaves if one survives. I believe it is time to start searching for the survivors in order to determine how their unique experiences may have caused them to survive the insidious Diar called ROHHAD, and add that knowledge to ongoing research into its causes and, hopefully, future treatments.

Hi MaryM

I stumbled upon your post whilst doing some research. My daughter is 19 and has been diagnosed with ROHHAD. She is also an anomaly as she is still alive as most of these poor kids pass away at an earlier age. I would love to chat - drop me a line to [email protected] if you're interested.

I hope to hear from you
Regards
Michelle