The LA Times has an excellent, lengthy two-part series detailing the experience of a brave young woman undergoing surgery for neurofibromatosis. She is a normal girl unable to have a normal life because of the accident of a genetic trait.
Much too long to excerpt here, so I'll just offer the relevant links and a recommendation to spend a few moments, especially if/when you think your own life is difficult.
Part one of the story. Photo gallery during childhood.
Part two of the story. Photo gallery of the perioperative period.
via Neatorama.