10/06/2026
One of the good things about becoming a parent of a child with PWS has been to connect with families from all over the world who have a loved one with PWS. It truly is a global village.
During awareness month this connection becomes stronger as many of the associations around the world share stories to raise awareness. This year we reached more people in other countries via our social media.
One of our followers is Charles, who we were so pleased to connect with. He volunteered to share his story. Usually we only share stories about South African’s and African’s living with PWS but sharing Charles’ story today in celebration of our global reach in May
Charles is 37 years old and is living with Prader Willi Syndrome. He stays in a supported living establishment in the UK. He has his very own two bedroom apartment with two bathrooms and kitchen/lounge. In the kitchen, the fridge and freezer have highly secured locks on the doors which keeps him safe.
During the day he goes out walking to maintain his weight and also rides an indoor exercise bike.
He grew up with his parents who ensured he lived in a food secure environment and maintained a healthy lifestyle and weight, which he continues to do whilst staying in supported living.
One thing that can be difficult for him is when other people eat sweets and chocolate in front of him.
Understandably this is incredibly hard for people living with PWS and another reason why it’s important to raise awareness and understanding of how stressful it is for them.
In many societies kindness is shown by giving and sharing sweet food. For those with PWS it’s the opposite, kindness is shown by not doing this and not eating in front of them.
