If a cure became available today, Ngai knows exactly what he would do. He would gather his friends on the basketball court and, for the first time in his life, would play an entire game. No long breaks for a full glass of ice water. It isn’t that he is always thirsty, it’s that he needs something cold to hold onto, to soothe the painful burn in his hands that happens whenever he exerts himself…
I don’t like to call it a disease because most diseases that I know about they, they really take you out. I like to call it a disorder because I’m still fighting. I’m still strong. I still go about living my life.”
Paul is more than just willing to share his story. He wants to tell it. He wants people to know that he pre-medicates to deal with the pain, that he plans his commutes carefully in case he has gastrointestinal distress...
I want to help make a difference. I want to share my story and put a face behind the disease, for those that either deal with it on a daily basis in the lab or even at their desk.”