During another activity we asked what others should know about PWS. The group had discussed similar ideas before at the last leadership group meeting, but this time, we asked them to work in groups to say what information we should include in a new resource for peers, flatmates, classmates etc. It became clear that getting the right information across really mattered to them and their messages were strong. It also became apparent that the best people to convey these messages were themselves and a well supported suggestion was made that a video by the group would convey this important information very well. Click here to read What Others Need to Know.
A summary of recommendations are:
- Understand the importance of a good diet and an exercise plan/routine.
- Offer different exercise options.
- Find out why we are anxious (and examples of this were discussed).
- It is important we are treated as adults.
- We need to be kept busy and not bored or thinking about food – try to help us NOT think about food.
- Be respectful about food (e.g. don’t turn up with food).
- Be understanding. We are not always able to explain ourselves or our thoughts. We are often mis-understood.
- Being aware that despite having PWS, everyone is different, unique, and has different learning styles and preferences.
- Wanting others to know that they have their own voice and opinions.
Other points made at the meeting were:
- A call for an adults camp because they would like to be able to see each other more often.
- The Leadership Group would like more involvement in planning and helping with activities at future camps.
- Facebook chat was discussed and the possibility of Zoom meetings.