Change Prader-Willi this Christmas
Prader-Willi Syndrome is not well known but afflicts 1 in 15,000 people and their whole family. At birth, babies have floppy muscles so that they can't feed and may need support to breathe. Some need tube feeding for more than a year. Every day they need therapy, hard work and injections to help them get strong enough to feed, hold up their heads, grab, sit up, crawl, stand, walk. Things we take for granted.
Between 2 and 8, they develop an insatiable appetite despite only needing 60% of calories. Imagine always feeling starving, no matter how much you eat. People with PWS can binge eat to death in a single episode, especially as they have a high pain threshold and rarely vomit.
They suffer from numerous medical complications - prone to mental illness and psychosis, meltdowns and rages, scoliosis, sleep apnea, respiratory issues, anxiety, cognitive impairment, autism, infertility, obesity and all of its related issues. People with PWS need supervision of their food-seeking all their lives.
Please help fund a Clinical Fellow to provide care for people with PWS and to do research into life-changing treatments.
Although we often talk about the insatiable appetite aspect, PWS is so much more than that. Our children and adults live with crippling scoliosis, anxiety and other mental health issues, behavioural issues like perseverance, defiance, being oppositional, low threshold for meltdowns. They also have sleep apneas, fatigue, narcolepsy, impaired cognition, poor temperature contril, impaired pain sensation (imagine the damage from continued walking on a fractured ankle!), slower sensory processing, speech difficulties.
Imagine - a 3 year old child developing anxiety. Needing to know what time things are happening throughout the day, checking over and over. Another needing to know everything is packed in his bag, checking over and again, before they can leave the house. No child deserves that.
Adults talk about the "PWS monster" that they constantly fight to manage.
Yet people with PWS are incredibly social and loving people who often want the same things in life we do - to have fun, a role, a partner, children.
There a 3 main support organisations in Australia. The PWS Association (Australia and state organisations) to support parents, the PWS Better Living Foundation to build appropriate housing solutions for adults and the Prader-Willi Research Foundation Australia, working towards improved clinical care.
Why not donate $15 to one of these organisations. $15 because PWS is an anomaly of Chromose 15. Ask 15 of your friends to do so. Together we can change the future for people with PWS and for their families.