Disorder Affects Local Girl

Jaslee Kerner

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Imagine not being the person you are today. Picture yourself being born with a life changing genetic disorder. Instead of being an outgoing person, you have troubles socializing with others. Or if you weren’t able to have what society considered as having the “perfect” body anymore. Instead of having a chance to be a straight-A student, you weren’t able to keep up with your classmates and had to attend a special school. Although you may not have been born with a genetic disorder, you may know someone who was. Hope Graesser, a GHS sophomore, is one of those people. She was born with Prader Willi Syndrome, a disorder that causes her to behave differently than most people and affects her mental abilities.

Prader Willi Syndrome (PWS) is a rare genetic disorder that occurs in one of every 15,000 births. Unlike most disorders, Prader Willi affects females and males almost equally, and it occurs in all races and ethnicities. This genetic disorder starts with an abnormality on chromosome 15. Researchers have found three ways that this abnormality can occur. The most common reason is caused when part of chromosome 15 is missing from the father. 30% of cases are caused by the child receiving two chromosome 15’s from their mother and zero from their father. The final cause results when a genetic mutation influences one of the parent’s chromosome 15’s to be inactive. All three of these theories can cause children to have a dysfunction of a portion of the brain called the hypothalamus. Your hypothalamus controls thirst, hunger, body temperature, sleep patterns, and emotional activity, so if you have dysfunction in this part of your brain, you will not be able to control those responses properly.

Prader Willi is confirmed by a blood test, but other symptoms and characteristics are noticeable. As an infant, the baby will have a weak cry, poor sucking reflexes, and noticeably small hands and feet. Babies with PWS frequently require tube feeding. Their feeding has to be closely monitored. After a while, their strength improves and interest in food increases. Between the ages of two and four, is when the greatest increase of overeating occurs. The child may start to hoard and steal food. As a PWS child grows up, more of the symptoms become recognizable. A small structure, weak muscles, an increase of uncontrollable hunger, and daytime sleepiness all come with PWS. All of these symptoms can lead to obesity, back problems similar to scoliosis, and the inability to function properly throughout the whole day.

Treatment of PWS depends on individual cases. Procedures relating to growth hormone therapy, sleep therapy, physical therapy, and behavioral therapy can all weaken PWS, but they aren’t a cure. Special treatment on the eyes and back and special medicines may also be required.

Although PWS was first discovered in 1956, no cure has been found. Treatment plans can be taken to improve PWS, but the disorder continues to affect people worldwide, as it does sophomore Hope Graesser. Researchers are scrounging for a cure. Meanwhile, PWS patients continue to be trapped in their disorder like a bird in a cage.

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