A 15-year-old girl from Mississippi, who weighs 380 pounds and has a rare genetic condition called Prader-Willi Syndrome, wins the Miss Amazing crown.
Anna Hankins' incurable disease gives her insatiable hunger leading to chronic obesity, intellectual delay, and shortness of height compared to peers her age. Anna's family said she was suffering from the condition since she was a baby and the disease has progressed over time.
"When she was little, the first words out of her mouth were 'I'm hungry' and the last ones were 'I'm hungry,'" said Anna's mother, Jennifer Hankins. Jennifer added that her daughter's appetite was uncontrollable that they had to lock the refrigerator.
Jennifer admitted that eventually, they did not know how to stop Anna's cravings that she got bigger and bigger. Currently, Anna is on a 900-calorie restricted diet since her body is having a hard time metabolizing food.
Rare Disease
About one in 15,000 babies born in the United States has Prader-Willi Syndrome or PWS. Individuals who are diagnosed with this rare condition experience poor muscle tone, which means that infants may take longer than usual to have control of their neck and trunk as well as poor sucking reflex.
Other symptoms include distinct facial features, poor responsiveness, and underdeveloped genitals. Once the child reaches adulthood, weight is on a steady increase as appetite goes beyond normal. There will be speech and behavior problems, sleep disorders, and cognitive or intellectual disabilities.
However, PWS is not a debilitating disease, and patients can still lead a functional life once their body adapts to their environment. Lori Brasfield-Sanders, director of Miss Amazing Mississippi, said that Anna has been an inspiration not only to those who share the same illness but also to normal people.
"The biggest misconception people have regarding people with disabilities is that they cannot lead full, engaging lives. Anna is an amazing ambassador," Brasfield-Sanders said.
Treatment And Rehabilitation
Persons with PWS typically have missing chromosomal genes, ones that are largely contributed by the father. The missing genes are then replaced by those from the mother or vice versa in a process called uniparental disomy, according to Prader-Willi Syndrome Association website.
Another cause of PWS is imprinting mutation, which is a very rare class of the disease occurring in 1 to 3 percent of patients. When the mutation happens, the 15 paternal chromosomes, though present in the cells, remain inactive.
Currently, there is no cure for PWS, but the management of symptoms is crucial. The Foundation for Prader-Willi Research recommends the elimination of insatiable appetite and obesity for the patient to live independently.
