I agree with the need-to-know basis. I never really told anyone and it was somewhat embarrassing for me as a child when I faced difficulties such as gym class running. I has my splenectomy at an early age so I was always embarrassed about showing anyone my scar, and I still don't like to take my shirt off at the beach.
It's something that each individual has to deal with, and it really helps having a support network such as this website. A few months ago I randomly met another woman my age and she was really open and told everyone she said thal. because something came up about red meat when ordering food. I thought I could talk to her about it and added her on facebook but she chose to ignore my message me so I really felt lost once again, and that even someone who had thal. wouldn't want to talk to me about it.
I just joined this site and have been treated so kindly and with compassion and understanding and feel that I'm now in touch with something I've been missing out on for a long time.