Table 7.

Living with Prader-Willi syndrome and future thoughts: quotes from narratives

Minors with PWS	When I grow up, I want to be a professor of endocrinology to study my syndrome. (Minor with PWS 007) I want to be a vet because I love animals. (Minor with PWS 014) I want to drive an ambulance and do many different jobs. (Minor with PWS 009)
Adults with PWS	I want to start a family by adopting a child because I have so much love to give and to be with my boyfriend. I hope to work in the same place where I am. I do not know how to live without my parents; they help us a lot. (Adult with PWS 013) I want to go live with the person I love the most in the world and to have children. Above all, I want to become a famous singer, and personally meet all my favourite singers. I want to get married and live in a beautiful house with a pool. (Adult with PWS 009) I hope that medicine will be able to find a drug to that can increase my satiety and limit my nervous hunger, which is unfortunately increased by my syndrome. Some moments are hard to overcome. I hope to live as well as I can with the consequences of the syndrome, and I hope that doctors are able to find treatments to alleviate the challenges. I hope that other people will also be able to live better lives. (Adult with PWS 015)
PWS caregivers	I am sure that his future will be full of satisfaction. We are working to ensure a positive future for him and to find him a job that makes him happy and confident in his abilities. (Caregiver 075) I believe the future will be challenging; I hope that I am wrong, but I realised that most people care most about their own business. Indeed, it is painful and challenging to care for or remain close to people with this kind of pathology. Still, perhaps if people did their part and committed themselves more to social causes, the future could be different. We should learn from an early age that we need to help other people and stand by those in need. (Caregiver 054) As long as we, her family, are there, I think that her future is protected. What comes after is frightening, but I know I have to do something for her… I owe her that! (Caregiver 031)

PWS, Prader-Willi syndrome.