Diagnosis of PWS can come as a huge shock to families. Knowledge of the syndrome and how it affects your child is important. The PWS Association is a parent support group and help is readily available.
PWS presents many challenges in its management, mostly in behaviour and dietary management. You will become your child's chief advocate throughout life and will learn the skills needed to do this, with support, knowledge, and understanding.
Children with PWS are very receptive to learning. Although they may have poor numerical skills, they show good ability with reading. Often quick to learn computer skills, many also show good fine motor skills. They benefit greatly from teacher aide time, or any one-on-one teaching.
Prader-Willi Syndrome is caused by a small deletion in 15th chromosome. It is a genetic disorder. The syndrome is organic; there is a neurological flaw in the brain that affects cognition, understanding , emotions, and behaviours. Coupled with this, there is a presence of intellectual disability. Behavioural challenges manifest themselves in PWS to varying extremes; not everyone shows all characteristics to all extremes.
Without sex hormone therapy, sexual maturity in PWS does not fully develop. Most do not reach sexual maturity, although there are several cases reported worldwide where a woman with PWS has had a baby, there are no cases of men with PWS fathering a child.
Residential caregivers play a vital part in the life of a person with PWS. Whether respite care, alternative care, or full residential care, group homes or supported living, it is essential that caregivers know what it means to support a person with PWS.
If you are a teacher, or teacher aide, this section will give you further resource details of workshops designed to help you understand the unique needs of the student with PWS, both educational needs in the classroom, and social needs within the school situation.
Consistent management of food intake is required for life with PWS. Although Growth Hormone treatment will make a difference to a child's ability to burn off calories, the constant hunger and desire to seek food is always there
Siblings play an important part in the life of a child with PWS and they need just as much support, knowledge, encouragement, and understanding as their brother or sister.