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  • Home - The Association is a parent support network formed to improve the quality of life for all persons with PWS in New Zealand and their families. It also aims to collaborate and affiliate itself with other organisations with similar objectives both in this country and overseas and to encourage research and exchange of ideas, projects, and experiences in regard to the best practice and management of this syndrome.
  • Support - Supporting people with Prader-Willi Syndrome and their families
    • Beyond the Diet - for the dietician -
    • For New Parents - 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.
    • Management - 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.
    • School Years - 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.
    • Challenging Behaviours - 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.
    • Sexual Development - 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.
    • Guidelines for Residential Caregivers - 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.
    • Educational Workshops - 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.
    • Dietary Management - 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 - 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.
    • Ethics
  • Medical
    • GH Consensus Statement - On June 15, 2009, the PWS Association (USA) Clinical Advisory Board put out a consensus statement regarding growth hormone treatment in Prader-Willi Syndrome.
    • Growth Hormone Therapy - There is now well-established research world-wide that supports the evidence that GHT not only increases height (linear growth) but also does much to improve body composition.
    • Growth Hormone for Adults - With the advent of puberty, the window of opportunity closes for increasing height through GH intervention due to a "capping" of skeletal growth potential. Further, GH levels normally decline with age in all populations.
    • Central Adrenal Insufficiency in PWS - Because some children with PWS do not have fevers when ill, it can be difficult for parents and physicians to know when the child is sick enough to put the body under significant stress to accuratelyl assess the presence of central adrenal insufficiency. Thus a stimulation test may be the best way to detect adrenal insufficiency.
    • Anaesthesia concerns for patients with PWS - Individuals with PWS have in addition other characteristics such as an abnormal physiologic response to hypercapnia and hypoxia, a narrowed oropharyngeal space, hypoplastic dental enamel, thick secretions, prolonged and exaggerated response to sedatives, and increased risk of gastric aspiration that can lead to potential difficulties in airway management during the perioperative period
    • Osteoporosis - Many individuals with PWS have osteoporosis (low bone mineral density). This condition is most often diagnosed in adolescence and adulthood. The cause(s)of the osteoporosis is not totally clear, but it is thought to be primarily due to the growth hormone and sex hormone deficiencies that occur in PWS. Hypotonia is probably a contributing factor as well.
    • Medical Overview for professionals - This revised paper covers life-threatening medical concerns such as: Anesthesia, medication reactions; high pain thresholds, respiratory concerns, lack of vomiting, severe gastric illness, body temperature abnormalities, diabetes, osteoporosis, hyperphagia, diagnostic testing, quality of life issues.
    • Guidelines for Medical Professionals - For a clinical diagnosis, the following is a consensus diagnostic criteria for Prader-Willi Syndrome. Authors: Holm et al. Published 1993, Pediatrics 91, 398
    • Ghrelin - Recently a lot of information has been circulating about a hormone called "ghrelin" which has been found to interfere with the ability to lose weight. The sensation of hunger is extremely powerful. We all experience it and we believe those with PWS experience it even more strongly and constantly. Feeling hungry can result in irritability, anxiety, stress in the best of us. The nature of that powerful stimulus has, until now, never been clearly identified.
    • The Genetics of PWS - By Linda Keder, Editor, The Gathered View (Reproduced with permission from The Gathered View) When the medical world first learned about Prader-Willi syndrome in 1956, doctors had no idea what caused people to have this collection of features and problems that we now know as PWS. It is only in the past 20 years that researchers have discovered the genetic changes on chromosome 15 that are responsible for the syndrome. In 1981, Dr. David Ledbetter and his colleagues reported a breakthrough discovery
      • The Genetics of PWS: An Explaination for the Rest of Us - By Linda Keder, Editor, The Gathered View (Reproduced with permission from The Gathered View) When the medical world first learned about Prader-Willi syndrome in 1956, doctors had no idea what caused people to have this collection of features and problems that we now know as PWS. It is only in the past 20 years that researchers have discovered the genetic changes on chromosome 15 that are responsible for the syndrome. In 1981, Dr. David Ledbetter and his colleagues reported a breakthrough discovery
      • The Three Genetic Forms of PWS - Although every case of Prader-Willi syndrome is due to the baby failing to receive active genes from a specific section of the father's chromosome 15, there are three different ways that this can happen
      • Genetic Tests Used to Diagnose PWS - Because the genetics of PWS is so complicated, it usually takes more than one test to be certain whether someone has PWS and what form of it they have. The major tests that are used in the diagnosis of PWS are shown in the table. Which genetic tests are used, and in what order, will depend on a number of considerations
    • PWS look-alike disorders - In April 2001, Celanie K. Christensen, MS, and Bryan E. Hainline, MD, PhD from the Dept of Medical and Molecular Genetics and Pediatrics of Indiana University School of Medicine, wrote a comparative article on syndromes that have some similar characteristics...
    • Oxytocin study
  • Our Association
  • Publications
    • Printed Publications - Free Distribution Pamplets and also PWS Books available for purchase.
    • Articles - Published Articles available about PWS
      • Balancing Act - a list of characteristics, or a real person? - by Linda Thornton One of the most difficult things to deal with when living with or working with Prader-Willi Syndrome is keeping a balance between understanding the person and understanding the behaviour caused by the syndrome. There is a huge responsibility on parents to be able to supply the information needed while making sure our child is a person first, and recognised in their own right.
      • Working with People Whose Behaviour Challenges You - Sourced from Tautoko Services Ltd One of the best things we can do to try to understand what is happening when faced with 'challenging' behaviour, is to put ourselves in the shoes of the person and try to understand what is driving them to act out this way. This is probably the easiest thing to say, and the hardest to do, particularly if you are a parent and faced with some really outrageous behaviour that needs dealing with right away.
      • Using Medications as a Management Strategy for Persons with PWS - by Barbara Whitman, PhD, Prof. of Paed. St Louis University School of Medicine Often, one of the first questions of parents who have learned that their child has PWS is, "What medications may s/he need?" This simple question requires a very complex answer. As with many genetic syndromes, there is no "cure" for PWS. Medications and other medical interventions are employed to correct specific impacts of the disorder, or for "symptom management" of aspects of the disorder. For example, heart surgery may completely correct a heart defect in a child with Down Syndrome but does not change the character of the syndrome itself.
      • What Causes the Increased Appetite in PWS? - by Dr Tony Goldstone and Prof. Dick Swaab, Netherlands Institute for Brain Research, Amsterdam. It is thought that the problem in PWS is abnormal development of a part of the brain called the hypothalamus. The hypothalamus has been known for a long time to control appetite, as well as many other processes that are usually affected in PWS, such as growth and sexual development. However the hypothalamus is a very complex structure and contains many different brain chemicals, many of which may effect appetite.
      • Will it be ok? - Sometimes you think the whole world is against you, just like a child you have your own questions. This rather perceptive article was found on the back of a cereal packet. Perhaps it will be helpful.
      • Siblings - What do we tell siblings about PWS? When is the best time to tell them about their brother or sister who has special needs?
      • Just for Grandparents - What grandparents need to know - how to help their families. Grandparents need information that will help them understand what special needs their grandchild may have and how best to support their own son or daughter in caring for this child
    • Stories - Family Stories - MY STORY by Francie (aged 12 yrs)
    • PWS Downunder newsletters
    • Publications from other countries
    • Resources - Some useful downloadable PWS and general New Zealand resources.
  • IPWSO Conferences