My son was dx at 17 yrs old but the dr thinks he's had this since he was 6, but wrongly dx with a platelet defect. They went through everything from cancer to lupus, till they said it just looks like a platelet defect. 10 yrs later they found out what it really is PNH. He is on soliris with no transfusions, and does everything he wants to do (except leave the country).
With an ultra rare disease I dont think there is a typical or normal. I hope everything works out ok for you and good luck.