I wanted to share something I recently wrote to a mom asking questions about her 20-year-old son's future as an undiagnosed
Cushie. She said she has an appt to see the endo, but wanted to ask a group and me what we thought.
"I smiled when you said we know more than the docs. It's true. You'd never get 6 docs to respond in three short hours.
After seven active years of online searching and bonding, I've watched a lot of Cushies' journey. I met many in person, spoken to many on the phone, and corresponded with even more online. There is no board game that some follow here and some do this. Every Cushie has different symptoms, different presentation, different surgeries, reaction to meds, etc. Some are cured with one pit surgery; some five. Some pit tumors are inoperable so people try medication that rarely works. Many end up with a BLA like me and do very well. Sometimes these pesky tumors that have been hiding show up finally to wave hi. You will not know your son's until it happens, just like life :)."