When it comes to the different types of eating disorders, some are more well-known than others. While most people have heard of bulimia and anorexia, many are not familiar with Prader-Willi syndrome. This disorder causes people to be unable to experience the feeling of being full after they eat, so they exist in a constant state of hunger. This drastically impacts their physical, mental, and emotional health. Living with Prader-Willi syndrome is typically a lifelong event, and while the illness cannot be cured, it can be managed by treatment professionals who understand the intricacies of this disease.
What is Prader-Willi Syndrome?
Prader-Willi syndrome is a genetic disorder caused by an error located in the region of chromosome 15 in a person’s genes. The gene malfunction occurs randomly and is not inherited. The symptoms usually occur shortly after birth, but genetic testing by a medical professional should be done to ensure parents receive the correct diagnosis. Those with Prader-Willi syndrome will display a constant need to eat because they never achieve the feeling of being full. This symptom typically becomes apparent around the age of two. This challenging disorder can cause a lot of strife, frustration, and difficulty for the person who has it, as well as their parents or other caretakers while they are children. Estimates of how many people have Prader-Willi syndrome worldwide range from 1 in 10,000 to 30,000 individuals.
Dangers of Prader-Willi Syndrome
While at first glance, having Prader-Willi syndrome may seem like it’s simply a matter of not being able to feel full, it actually can cause serious physical and emotional damage to a person. Perhaps the most common dangerous side effect of this illness is obesity. Because the individual never feels sated from eating, they tend to binge eat and overeat at a consistent rate. As a result, many become overweight or morbidly obese. Adding to the issue, because so many of these individuals have low muscle mass, they often do not engage in regular physical activity. Obesity can lead to high blood pressure, high cholesterol, heart disease, and Type 2 diabetes.
Other complications can include developing osteoporosis and sterility. As well, the quality of a person’s life can be dramatically impacted by having Prader-Willi syndrome. The constant feeling of hunger and often being misunderstood because of it can cause discord with family members, friends, co-workers, and schoolmates.
What are the Primary Signs that Someone Has Prader-Willi Syndrome?
Not all people with Prader-Willi syndrome experience the exact same symptoms, but many of them prove quite common. The signs begin during infancy and can change somewhat as the child gets older. Typical signs of Prader-Willi syndrome during infancy include:
- Poor sucking reflex when nursing or drinking due to decreased. muscle tone. If not tended to quickly, it may result in failure to thrive.
- Poor muscle tone, with the baby resting with their elbows and knees loosely extended instead of fixed.
- Lack of responsiveness. The infant appears tired or weak and does not respond well to stimulation.
- Different facial features that may include almond-shaped eyes, a thin upper lip, a turned-down mouth, and a narrowing of the head at the temple.
- Underdeveloped genitals. Females may have unusually small labia and a clitoris, while males may have an unusually small penis and scrotum, and the testicles may be undescended.
Commons signs from early childhood to adulthood include:
- Constant cravings to eat due to consistently feeling hungry, even after eating a full meal or overeating.
- Weight gain that can cause a person to become overweight or morbidly obese.
- Hoarding food.
- Eating frozen food, unappealing food, or garbage out of desperation to consume something.
- Poor physical development including short height and low muscle mass.
- Delayed speech skills that may continue into adulthood.
- Delayed motor skills development, including sitting up and walking.
- Sleep disorders.
- Cognitive difficulties, including impaired ability to think or problem-solve.
- Behavioral issues, such as difficulty controlling their temper and lashing out due to difficulty accepting their illness.
Prader-Willi Syndrome Treatment
If a parent suspects something is wrong with their child, they should always get a thorough assessment by the child’s doctor. Parents who regularly take their children to their physician as part of well-baby visits and when there are signs of trouble tend to find out if their child has Prader-Willi syndrome earlier than most others do.
Treatment for Prader-Willi syndrome usually requires including several professionals. This can include an endocrinologist, a geneticist, a behavior specialist, a dietician, physical and occupational therapists, and a mental health counselor. Treatment approaches that begin in childhood can include:
- Nutritional supplements such as high-calorie formula
- Weight management to help avoid massive weight gain while still getting a balanced nutritional intake
- Treatment for various sleep disturbances
- Human growth hormone treatment to help the child grow at a healthy rate and improve their muscle tone
- Behavior management to help set schedules for when the child can eat
- Medication to help ease emotional and behavioral issues
- Seeing a therapist to help adjust to having this disease and learning to manage the symptoms of it
- Hormone replacement therapy
Some of these approaches can be continued into adulthood. Many people also benefit from attending support groups for those who have Prader-Willi syndrome.
Contact Our Trellis Eating Disorder Treatment Center in Los Angeles, CA
Trellis Recovery Centers provides a structured residential eating disorder treatment program for adult women and men who need help overcoming an eating disorder. We employ a dedicated, experienced staff of therapists who support people in their efforts to recover from an eating disorder. With our help, a life without an obsession with food, weight, and body image can become a reality.
For more information about our treatment plans, contact us now. Our staff is happy to help you understand eating disorders and discover your strength and ability to recover from them.
