SOMEONE YOU KNOW HAS PRADER-WILLI SYNDROME

Whether you are a playmate or classmate; neighbor, relative or friend; baby-sitter or companion; it helps know about Prader-Willi Syndrome and the children and adults who have it.

Prader-Willi syndrome is a birth defect. This means that a person is born with it, cannot help it, and cannot outgrow it. Doctors don’t know why it happens and there is no cure yet.

Here are some persons who are typical of Prader-Willi syndrome at their ages.

Jane, 3; she was so weak as a baby she could hardly suck. when she learned to walk, which took a long time, she toddled straight to the refrigerator! By then she wanted to eat everything, all the time. she was slow to talk and hard to understand, but this is improving. She’s good natured and affectionate, but sometimes gets stubborn or has a temper tantrum.

Or Jimmy, 9; in school he needs special education. He can read and spell, is a whiz at puzzles, and like to play Nintendo. He’s always hungry and hunting food, so his mom, dad and teachers watch him carefully so he won’t gain weight or take food from others. At home the pantry and refrigerator are locked. At birthday parties he gets a tiny amount of cake and ice cream.

Or Jack, 16; he wants so much to be like everyone else. But he’s very short, can’t ear the same foods or play sports as well as "the guys." He likes to bowl and go to movies. He constantly searches for food, and his parents work hard to keep his weight down. When Jack’s aunt visited, he searches her suitcase. He found a full bag of candy and ate all of it.

Or Jean, 26; she lives in a group home where she has an active social life and a caring staff. She works at a sheltered workshop where she uses a variety of skills. Constant supervision helps to keep her weight down. Her friend, Janet, who also has Prader-Willi syndrome, lives at home where it is very hard to the pounds off. Janet would like to be in a group home, but placement for her is not yet available.

Babies are born with very weak muscles. They get stronger as they grow, but have poor balance and re rarely well coordinated, even as adults.

Children and adults have a compulsion to eat, which they cannot control themselves because their brains don’t tell them that their stomachs are full. The unavailability of food frees them up to work or play.

Children and adults can’t eat as much as everyone else because they gain LOTS and LOTS of weight on considerably fewer calories.

Persons with Prader-Willi syndrome usually are friendly, pleasant and mild mannered. If they become distraught, however, it’s hard for them to settle down. It is difficult, if not impossible, for them to control their behavior.

Adolescents do not reach full physical maturity. They remain short and look much younger than they really are.

All problems with learning and understanding require special assistance in school. They have difficulty remembering, so frequent repetition of information is helpful.

• never making fun of the child or adult with Prader-Willi syndrome;
• resisting you temptation to give him or her "just" one little cookie or piece of candy (you wouldn’t give an alcoholic "just" one little drink);
• being aware of their ability to tell stories and manipulate to get what they want ("My mom said I cold..." should always be checked out);
• keeping food out of sight - under lock and key is best - and out of reach, or by watching it very closely (they are unbelievably quick and quiet at finding and getting food);
• providing alternatives in a food situation, e.g., diet soda, diet gum, raw fruits and vegetables;
• allowing an upset individual time for temper and behavior to settle down (you waste your breath trying to convince him or her to be calm and logical; ask a parent or responsible person for tips on what to do); and
• understanding that a person with Prader-Willi syndrome cannot resist trying to get food; if he or she is slim it is because a family has worked very hard to get weight under control.

The Prader-Willi Syndrome Association (USA) was formed in 1975 in order to provide a vehicle of communication for parents, professionals and other interested citizens. It is an organization dedicated to the sharing of experiences in how to cope with the syndrome. Chapters of PWSA(USA) are located in most states and are available for support, education and advocacy.

An annual national conference, a bi-monthly newsletter entitled The Gathered View, which incorporates contributions from members as well as professional advice and a wealth of other written materials and publications on Prader-Willi Syndrome, are all part of PWSA's effort to carry out its mission.

Supported solely by membership fees and donations, Prader-Willi Syndrome Association (USA) has made a difference in the lives of many affected by this unique syndrome. YOU, TOO, CAN HELP. Donations and membership applications may be sent to the address below.

Prader-Willi Syndrome Association (USA)
8588 Potter Park Drive, Suite 500
Sarasota, FL 34238
Phone: (800) 926-4797 Fax: (914) 312-0142

Email: pwsausa@pwsausa.org