People often ask me what it's like to live with a genetic disorder, which is a difficult question to answer because I have no point of reference as to what 'normal' is, what it's like to live without a genetic disorder. I am me, and this is all I've ever known. I could talk about the pain, the surgeries, the complications and the difficulties but that's not my style. All those things, along with my genes, make me who I am. They determine my personality, my attitude to life, my resilience in the face of adversity.