Hello!
I have an uncle and two cousins (his sons) with this condition. My uncle's condition wasn't discovered until he was in his late 50s, and a lot of damage had been done to his body. His four children were immediately tested, so my cousins began treatement in their 20s. They are doing quite well, and lead completely normal lives other than "donating" blood on a regular basis.
I hope things go smoothly for you.
Terri