“After doing lots and lots of research, I found that some patients have had success with gastric bypass surgery, and after the very first consultation, I felt like I had hope,” said Jenny Shapiro.
Since the surgery, Alexis Shapiro’s appetite has returned to normal. She is more active and has lost 50 pounds.
For Hannah Wilkinson and others born with abnormal chromosomes causing Prader-Willi, these kinds of surgeries are not an option because they do little to suppress appetites.
Tonya Wilkinson says her only hope now is to get her daughter to a specialized facility that offers around the clock monitoring and meal planning. But for now, even that is a fight because Tonya Wilkinson said she can’t get her insurance company to cover it.
“Insurers consider it to be your own fault. They consider it to be a matter of gluttony and sloth,” Lustig said. “And Prader-Willi patients are the proof that that is not true. So because insurers still view obesity as a behavior, Prader-Willi sometimes gets swept under the rug.”
“It is a life or death issue,” Tonya Wilkinson said. "And if I don't get help, I will lose her.”
For more information on Prader-Willi syndrome, click here or call the Prader-Willi Syndrome Association national hotline at 1-800-926-4797.