A strong national organization of families and professionals, PWSA (USA) offers a toll-free helpline, a bimonthly member newsletter and numerous publications about PWS, a World Wide Web page (www.pwsausa.org), an annual family conference and scientific meeting, and chapters throughout the country to provide local family support and advocacy.

Most cases of PWS are attributed to a spontaneous genetic error that occurs at or near the time of conception for unknown reasons. In a very small percentage of cases (2 percent or less), a genetic mutation that does not affect the parent is passed on to the child, and in these families more than one child may be affected. A PWS-like disorder can also be acquired after birth if the hypothalamic portion of the brain is damaged through injury or surgery.

It is estimated that one in 12,000 to 15,000 people has PWS. Although considered a "rare" disorder, Prader-Willi syndrome is one of the most common conditions seen in genetics clinics and is the most common genetic cause of obesity that has been identified. PWS is found in people of both sexes and all races.

Suspicion of the diagnosis is first assessed clinically, then confirmed by specialized genetic testing on a blood sample. Formal diagnostic criteria for the clinical recognition of PWS have been published (Holm et al, 1993), as have laboratory testing guidelines for PWS (ASHG, 1996).

PWS is a complex genetic disorder that typically causes low muscle tone, short stature, incomplete sexual development, cognitive disabilities, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity.

People with PWS have a flaw in the hypothalamus part of their brain, which normally registers feelings of hunger and satiety. While the problem is not yet fully understood, it is apparent that people with this flaw never feel full; they have a continuous urge to eat that they cannot learn to control. To compound this problem, people with PWS need less food than their peers without the syndrome because their bodies have less muscle and tend to burn fewer calories. No.

Unfortunately, no appetite suppressant has worked consistently for people with PWS. Most require an extremely low-calorie diet all their lives and must have their environment designed so that they have very limited access to food. For example, many families have to lock the kitchen or the cabinets and refrigerator.

In addition to their involuntary focus on food, people with PWS tend to have obsessive/compulsive behaviors that are not related to food, such as repetitive thoughts and verbalizations, collecting and hoarding of possessions, picking at skin irritations, and a strong need for routine and predictability. Frustration or changes in plans can easily set off a loss of emotional control in someone with PWS, ranging from tears to temper tantrums to physical aggression.

With help, people with PWS can expect to accomplish many of the things their "normal" peers do—complete school, achieve in their outside areas of interest, be successfully employed, even move away from their family home. They do, however, need a significant amount of support from their families and from school, work, and residential service providers to both achieve these goals and avoid obesity and the serious health consequences that accompany it.

We are working to bring our affiliates guest books, message boards, and free-for-all link services in the very near future. Stay tuned!

While a "cure" is not currently available, there are many medical and behavioural interventions that can minimize the impact of the genetic condition, allowing the individual to lead a life that is normal in many respects. Early diagnosis, treatment and multi-disciplinary management all play important roles.back to top

to increase the availability of information and best practices about PWS for service providers in southern Ontario. to determine training needs and develop appropriate training resources for staff working with individuals with PWS and their families

Whether an extremity, torso, or facial PWS, quite often there is asymmetry associated with the PWS side. The asymmetry is thought to be due to the extra blood flow in the PWS, though that doesn't necessarily account for hypertrophic bone growth. (Editor's note: we welcome some expert input here!)

A PWS is a statement of the technical, functional and performance characteristics of the work to be performed, identifies essential functions to be performed, determines performance factors, including the location of the work, the units of work, the quantity of work units, and the quality and timeliness of the work units. It serves as the scope of work and is the basis for all costs entered on the Cost Comparison Form.

The search engine currently uses the default 'noise' dictionary. This lists common words like 'the' and 'and' so that they do not get cataloged. The default dictionary also includes words like SELECT and ME unfortunately. This will be modified soon.

I have seen Dr. Waner. He I hope you get in, he is a very busy man. It takes a long time for me to get in.

If weight is not controlled, there is a higher risk of health issues related to obesity, including cardio-vascular and respiratory illnesses and diabetes. back to top

Absolutely NOT, though a lot of insurance companies would like you to believe it is. Depending on the location of the pws complications such as glaucoma, thickening of the skin, raised granulomas, enlarged libs, loss of sensation in extremities, not to mention psychological and social issues. Darkening and pebbling does not necessarily happen in all cases, but is certainly common. The current thinking is that the blood vessels in the port wine stain continue to grow with age (hypertrophy).