Siblings deal with rare Cushing's diagnoses
By KALEY LYON
COLBY -- As a junior in high school, Justin Kennedy began getting sick and missing school on a regular basis.
He was fatigued, unable to sleep at night and gaining weight rapidly. He also was unable to focus on his school work and began experiencing memory loss.
After several doctor's appointments, Justin was diagnosed with Cushing's disease, a rare disorder caused by excessive cortisol levels resulting from a tumor on the pituitary gland.
At the time of Justin's diagnosis, his younger sister, Jessica, also was showing symptoms of the endocrine disorder. Her diagnosis came at the same time.
"I think they both have had symptoms since they were little," said their mother, Judy Kennedy.
Other symptoms include a round facial shape, flushed cheeks, excessive hair growth, skin discoloration and depression, Judy Kennedy said.
Weight fluctuation is uncontrollable. Weight is gained at a high rate, despite diet, exercise and other efforts, Jessica Kennedy said.
"The weight has a mind of its own," she said.
The diagnosis, following many doctor's appointments and tests, came last November. Today, Justin, 19, keeps busy with a job at McDonald's, and Jessica, 15, is a freshman in high school taking online classes.
One of the most bothersome symptoms of the disease is the toll it takes on the sleeping schedule. Her children often are unable to sleep until early morning, Judy Kennedy said.
"When there was a chance for her to do online high school, it was such a relief," she said. "We don't have to worry about what time she starts her school work."
Appetite fluctuation is another side effect. The two go through phases where they have healthy appetites, then hardly eat at all, she said.
That's because the disease puts their bodies through various cycles, which can last for less than a day or for months at a time, Judy Kennedy said.
It's predicted that about 15 people in a million are diagnosed with the disorder, which can make it difficult to find support and get answers, she said.
The family, however, discovered an online support group and has enjoyed the opportunity to communicate with other families in similar situations.
"I honestly do not know where our family would be if I wouldn't have found that support group," Judy Kennedy said. "Even though it's still awful, it's better to know that other people have the same symptoms.
"There are people on the streets who have this and have no idea," she said. "And their doctors don't either."
Both teenagers also are preparing for surgery. In mid-May, the family will travel to Houston, where the siblings will have the tumors removed from their pituitary glands. This is expected to resolve the hormonal imbalances, Judy Kennedy said.
"I'm looking forward to that day," she said.
