I'm sorry to hear about your diagnoses. I'm afraid the only person I know with this was diagnosed as a small child and she's never had hair as long as i've known her. She sure does rock the no locks look though.

started CG on 6/25/12.
  • 2c with a strait underneath
  • normal elasticity on top, none on the underneath
  • Fine side of Normal
  • Thick hair
  • Poriosity is a mystery. I think its all over the place.