We first met Rania when she was just 14 years old - 11 years after she was diagnosed with Prader-Willi syndrome.
At just 3-years-old, Rania suddenly found herself battling a genetic disorder for which there is no cure. Prader-Willi syndrome, also called PWS, is a very rare genetic disorder that affects the genes of chromosome 15. The symptoms of PWS present themselves in various ways, including behavior problems, intellectual disabilities, and short stature. For Rania, her PWS results in difficulties with anxiety, hunger, and meals.
PWS can affect the hunger centers of the brain, causing someone to never feel full, regardless of how much or how often they eat. It also causes changes to the metabolic system, meaning that someone with PWS will have to consume less calories than others in their age and size group. In summary, Rania always feels hungry, but cannot eat as much as her peers.
In our society, socialization often occurs during mealtimes: families gather at the dining room table, friends congregate at restaurants and cafes, even holidays are celebrated with food. Being around food or people eating is very difficult for Rania. She feels great anxiety in food-related situations, or in situations where eating occurs unexpectedly. This means that Rania feels anxious much of the time in social situations, in school, or when her family goes on outings.