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Prader-Willi is not just an eating disorder, but a complex disorder that will need lifelong managing. With the right help and family support, people with this syndrome can, however, live long, happy lives.

I like candy. Growing up, I spent a fair amount of my allowance and gift money in the village square at the only store we had. An old man everybody called Uncle Bill ran a candy shop there. I loved to peruse the sugar-filled aisles looking at all the colorful penny candies. After we lovingly filled our bags and paid Uncle Bill our hard-earned money, us kids would run outside and eat right there on the stoop. Feeling full and satisfied, off we went to play. 

Many of us have good childhood memories revolving around candy and food. Humans enjoy food and most of our celebrations revolve around it. We pray over it, we toast over it and we admire people who can make a masterpiece out of it. Uncle Bill was a grumpy old man who never cracked a smile, and yet he was the most popular character in town. Food is powerful! However, for people with eating disorders, food can turn negative and even destructive.

Is Prader-Willi Syndrome an eating disorder?

The American American Psychiatric Association (APA) defines eating disorders as "illnesses in which the people experience severe disturbances in their eating behaviors and related thoughts and emotions", adding that "people with eating disorders typically become pre-occupied with food and their body weight".

According to the APA, eating disorders affect several million people, most frequently women between the ages of 12 and 35. There are three main types of eating disorders — anorexia nervosa, bulimia nervosa and binge eating disorder For the past 20 years, there has been a plethora of information on these disorders.

While very serious, most people can be helped or even cured of eating disorders. With Prader-Willi Syndrome, it’s not that easy.

I volunteer to help with events for intellectually disabled patients. For Valentines Day, we have a dance for the patients. We go all out and decorate the hall with balloons, we hire a disc jockey and provide plenty of cake, cookies, soda and candy. One patient, Robby, really liked the food.

Everyone like Robby, despite his having quite a temper. He would get angry when his share of cake and candy was eaten and gone. He would do his best to take more or steal others food when nobody was looking. We had to put a burly volunteer at the candy and cake table to prevent him from eating it all. Robby’s enjoyment of the evening revolved mostly around how much food he could eat. He had Prader-Willi syndrome.

Like people with eating disorders, those with Prader-Willi syndrome have an unusual and unhealthy preoccupation with food. But that's where the similarities end. Those diagnosed with Prader-Willi have a rare genetic condition affecting about 1 in every 10,000 to 30,000 people. The condition is not inherited, but is a random event that does not run in families. 

How is Prader-Willi Syndrome diagnosed?

As babies and toddlers, one of the first signs of the syndrome is low muscle tone. The baby may seem "floppy". They won't make normal milestones with sitting, crawling or walking. A parent may notice that their male child has undescended testicles. The baby will want to feed, but cannot suckle well, leading to slow growth and poor nutrition. A doctor may recommend a higher calorie formula.

Doctors and parents will probably see facial features such as almond shaped eyes, a narrow head starting at the temples and thin nose bridge. Of course, not all children with these features have the syndrome. Blood testing needs to be done for a certain diagnosis. 

As the child gets older, signs of an intellectual disability and behavior problems will appear, though learning problems are usually mild to moderate.They will have problems controlling their emotions.Outbursts are frequent as they cannot control their temper. The child will feel constant hunger because the portion of the brain that tells a person they are full doesn't work.

By the time the child is a teen, most will have a short stature with poor motor skills. Weight gain will be clear and well as underdeveloped sex organs. Most people with Prader-Willi's suffer with obesity and type 2 diabetes.

What can be done?

This syndrome has no cure, but there are treatments. The child needs a dedicated team of specialists including physical therapists, a licensed dietitian, a mental health professional and an endocrinologist.

The endocrinologist will help regulate and supplement sex and human growth hormones. This will usually start when a child would reach puberty. Girls will need estrogen and progesterone and males will need supplemental testosterone. A boy may need surgery for undescended testicles. 

Obesity and poor motor skills can be improved with help from a  dietitian and physical therapist. The constant need to overeat coupled with low muscle tone, makes obesity a sure thing. Exercise and a healthy diet is critical for reducing the risk of diabetes. Family support with the diet and physical therapy is key.

Prader-Willi Syndrome usually causes emotional problems, mood disorders and obsessive-compulsive habits, like skin picking. A psychologist or a psychiatrist visit is needed to diagnose and address those issues. Sometimes medication is needed along with behavior therapies. During their school years, they will need special help from the teaching staff as well as school counselors and the nurse. 

 At home, keep meals and activities scheduled. Buy low calorie meals and snacks. Food may need to be locked up. Strict boundaries need to be set for behaviors. Emotional and physical outbursts are common. A therapist will help with strategies to cope. Joining an online or in person support group is helpful for caregivers.

After transitioning out of school, the adult with Prader-Willi will need lifelong support. They do well in group homes or facilities that can help them eat healthy and get the recommended exercise. Some will be able to work in a low-stress, highly supervised environment.

Prader-Willi is not just an eating disorder, but a complex disorder that will need lifelong managing. But with the right help and family support, people with this syndrome can live long, happy lives.

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