Originally Posted by
Pilot Muscle
I forgot to mention that I'm going to John Hopkins University in Aug or Sept for a 2nd opinion and possible treatment.
Right now gene therapy doesn't apply to anyone, it isn't ready yet. Only backup to eculizumab right now is bone marrow transplant. But Hopkins is one of a handful of the better hematology oncology programs that can handle this diagnosis.
Look, ANYTHING is waiverable if it's treatable and gets a good result, but you first need to work on the treatment and good result, and the FAA is going to tell you the same thing. They won't give you guarantees until they see the outcome - they just won't - but contrary to some people's opinions, they really do want to waiver everybody who is safe to fly. They've got people back to flying (Ok, Not Class 1 but flying Class 3) after heart transplants, for crying out loud.
Go to Hopkins and get their assessment. Get tuned up to the maximum they can tune you and get copies of everything. It will all have to go to Oklahoma City, because no individual AME has authority to clear you, all they CAN do is defer or deny. But the only ones that can say yes are the OKC guys, and they WON'T say yes until they get paperwork showing you have been optimally treated. If that means you put off school for a year, or just take standard freshman distribution requirements instead of immediately going into aviation, so be it.