Cambridge Who’s Who® member Donna Sellers is the founder of John’s Foundation for Cushing’s Awareness (JFCA, Inc.), a nonprofit foundation that raises awareness about Cushing’s syndrome in children. Ms. Sellers became involved in promoting Cushing’s awareness after her son, John, experienced a series of misdiagnoses before pediatricians determined that he had Cushing’s syndrome — a condition that occurs rarely in children. Through her work with JFCA, Inc., Donna Sellers empowers parents to push pediatricians to accurately diagnose children with Cushing’s syndrome by raising awareness of the disease.
Cushing’s syndrome occurs when the body accumulates too much cortisol, which is a hormone produced in the adrenal glands that regulates blood pressure and metabolism. When the body produces too much cortisol, significant changes occur in the body’s tissues and organs. Children diagnosed with the disease experience rapid weight gain accompanied by a decrease in growth rate (linear height). Other problems that may occur include: facial roundness; excess hair growth on the cheeks, arms and legs; development of pubic hair at a younger age than usual; irregular or absent menstrual periods; easy bruising; and, high blood pressure1. An estimated 10 to 15 of every one million people are affected each year, and only about 10 percent of new cases occur in children2.
Six years ago, Ms. Sellers took her son, who was five years old at the time, to his pediatrician because she noticed he weighed substantially more than other children his age. Within weeks after the doctor’s visit, John experienced a rapid weight gain and developed facial and pubic hair that normally develops in children between 10 to 12 years old. After notifying John’s pediatrician of the drastic changes, he underwent additional testing. Through a bone age scan, doctors found that John had the bones of an 8-year-old. They also found a tumor on his left adrenal gland that needed to be surgically removed. After the surgery, John was diagnosed with bipolar disorder, ADHD, OCD, borderline Asperger’s syndrome, and attachment disorder, among others, before his doctors were able to determine he had Cushing’s syndrome.
After enduring the experience of determining what was wrong with John physically, Donna Sellers decided to spread a message to physicians to encourage them to better recognize the symptoms of Cushing’s syndrome in children. She advocates for community education about Cushing’s, and provides support to families who are having their children tested for the condition. “I don’t want another family going through this alone,” Ms. Sellers noted. She continues to write articles about Cushing’s in local newspapers, and has reached out to government officials to sign proclamations for appropriate medical diagnoses in children.
Ms. Sellers home schools her son through the Georgia Cyber Academy, an online public school that offers Georgia students in grades K-12 an exceptional learning experience. The virtual school provides curriculum packages that include high-quality lessons with mastery-based assessments to ensure students achieve success at each and every grade level from elementary through high school. Georgia Cyber Academy accommodates gifted and special needs students who require a more rigorous or customized academic program, and students with health concerns that prevent them from learning in a traditional classroom setting.
To learn more about John’s Foundation for Cushing’s Awareness, or to receive information about Cushing’s syndrome, visit http://www.jfcainc.com.
1-2Keil, Meg (Winter, 2004) “Cushing’s Syndrome in Children” Retrieved November 5, 2010 from Cushing’s Support and Research Foundation website.