| Commitment |
The first thing that I did was to visit a professor in Switzerland to get a diet as pure as possible that could give strength and good energy to my child. I decided to follow it. (Caregiver 011) We began to have a different relationship with food and to be more aware of what we could and could not eat. (Caregiver 034) We tried to accustom the whole family to healthy eating as much as possible. I taught my son to read nutrition labels so that later he would be able to choose what is best. He already knows that he must not eat too much sugar and fat. We eat at fixed times, but it is not easy to manage his hunger. (Caregiver 040) |
I know eating a lot is bad for me. I follow my diet, so I don't get fat. (Minor with PWS 005) I stay on my diet, and I never steal food. Even if someone offers me something, I do not accept it. (Adult with PWS 032) I am following a diet that was prepared by a nutritionist. (Adult with PWS 023) |
| Strategies |
We are almost always able to keep it under control; we focus a lot on food education (ie, salads, vegetables, and no snacks). We let her choose among certain foods. This helped satisfy her, allowing us to eat differently. (Caregiver 032) Food is the main problem for my child; there are both positive and negative moments. So, we are tough if we need to be, but sometimes we make exceptions. (Caregiver 060) Food is always on our minds, but we try to manage everything in the best way we can. We try to live as normal a life as possible, and we try not to upset his habits. We give him some treats (he goes to parties, goes out with some friends, and can eat pizza). (Caregiver 064) |
I like to eat everything. I try to eat lots of vegetables, even if I do not feel full, and whole wheat pasta. When I am playing or doing a puzzle, I do not think about hunger. Mom tells me that if I want to eat more, I have to move around more. (Adult with PWS 003) I try to organise my day in fixed patterns, and I know I can eat at certain times. (Minor with PWS 003) So, I do not think about food, I go for long walks, I do crossword puzzles and other puzzles and I play on my tablet and computer. (Minor with PWS 006) |
| Criticalities |
Unfortunately, food is an obsession and is challenging to manage. I have found my little child hiding food many times. (Caregiver 052) The food issue is a daily challenge. Lunches and dinners are no longer quiet, and we live with anxiety. The kitchen is no longer a meeting place. (Caregiver 066) This is our conviction, a continuous struggle, day and night—the monster we have to defeat. (Caregiver 067) |
I eat outside of meals because I hate myself… I am hungry because my parents do not give me the right portions, and then I get fat and go to the hospital, I steal food… because I am hungry. I do not follow my diet. (Adult with PWS 014) Seeing other people eating is painful. (Adult with PWS 022) When I think of food, my eyes shine, and when I see food, I want it at all costs, and I cannot stop myself. I am always hungry, and I never get enough; when I overeat, I feel sick. When they tell me that I should not eat so much, I get angry and anxious. (Adult 031) |
