Prader-Willi Syndrome (PWS) is a rare, complex and unique, genetic disorder caused by loss of function of specific genes on chromosome 15. This affects 1 in 15,000 births, as well as males and females of all races and ethnicities globally.
As PWS affects part of the brain that is responsible for regulating the system in the body. Symptoms in babies include weak muscles, poor feeding and slow development whereas symptoms in childhood are feeling constantly hungry, intellectual impairment and behavioural problems possibly leading to obesity and type 2 Diabetes. Usually they will have small hands & feet, short in height & light in skin colour & hair.
Currently Prader-Willi Syndrome has no cure. Research is finding that lives of the people with PWS can be improved slightly with early diagnosis and careful management of the symptoms.
“Siblings are the people we practice on, the people who teach us about fairness, co-operation, kindness and caring – quite often the hard way.”- Pamela Dugdale
A sibling with Prader-Willi syndrome adds a unique dynamic to family life and living with a brother or sister, younger or older, can be quite challenging, but it also provides siblings with opportunities to learn empathy, patience and independence.
Having had an incredible brother who had a unique & rare disorder known as “Prader-Willi Syndrome”, has inspired me to create awareness & sibling support for those who are blessed with having such a family member, which you treasure forever!
My brother Gary, passed away in 2019, and I dedicate CKNU to capturing his zest for life with family!
The annual month of May, is PWS awareness month, please support us in creating awareness about Prader-Willi syndrome. Follow us on Facebook or on Instagram, the global PWS day usually falls on the last Friday of May, do try GoOrangeForPWS!
“Don’t shoot what it looks like. Shoot what it feels like.” – David Alan Harvey