Table 6.

Prader-Willi syndrome and the work sphere: quotes from narratives

Adults with PWS

My colleagues are supportive; they are good listeners and give me good advice. (Adult with PWS 008) I deal with publicity, I answer the phone, I receive the people who visit, and I do other tasks that the office managers assign me. If I am happy and motivated, I do not go looking for food. I look for food only when I am nervous. I have made so much progress, and so I do it less. (Adult with PWS 015) I often have nervous attacks and respond badly. I offend with swear words those who make fun of how I am doing my job. (Adult with PWS 006) I work in a nursing home 5 days a week. I wash laundry and iron and fold the guests’ clothes. I work with a girl who takes care of me and teaches me many things. Every day I work with a different person, depending on the shift. With them, I feel good because they treat me like a normal person, and they praise me every time I work with them. (Adult with PWS 013)

PWS caregivers

My colleagues firmly support me. They give me the ability to meet my personal needs, which allowed me not to leave my son and my wife alone. They were like a second family to me, and they all contributed as much as they could. (Caregiver 054) I had to leave work. I was working in the factory 8 hours a day, and it was not possible to ask for a part-time position. (Caregiver 053) The job was a safety valve, a place to have a normal life. (Caregiver 023) When another daughter of mine had cancer, my colleagues were very involved, helpful and supportive. Everyone understands cancer. The disability is different, particularly the Prader-Willi syndrome, which is not very obvious. (Caregiver 008)

PWS, Prader-Willi syndrome.