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Donelle Trotman was only in his 30s when his health suddenly took a strange and frightening turn.
He was rapidly gaining weight — more than 100 pounds in one year. His upper torso was getting bigger, but not his legs. And he felt overwhelmingly tired.
“My body just started changing,” the Staten Island, New York, native told TODAY as part of a three-day series, "Medical Mysteries," looking at people who have recovered from rare diseases.
It was especially puzzling because Trotman had never had weight issues before.
In school, Trotman was never a skinny kid, but he wasn’t overweight. He loved sports, playing both basketball and baseball.
So as he entered adulthood, he was active and in good shape. Then, three years ago, he suddenly began to gain weight.
“It was just specific places: My stomach, under my arms, my back of my neck, my face, the bottom of my back,” Trotman said. “My legs stayed the same for a long time.”
To lose the extra pounds, Trotman began running, working out and lifting weights. Nothing worked.
In the span of one year, Trotman gained more than 120 pounds, topping the scale at 366 pounds, twice the amount he weighed at 18.
“I doubled, like, I got a whole person on me,” he said.
There were other alarming changes. Trotman became so easily tired that he’d get out of breath just by chewing food. When he woke up seeing double three months ago, he knew it was time to go to the hospital.
Doctors ran a flurry of tests, but the results offered few clues, leaving everyone puzzled. Then one day, an intern noticed stretch marks all over Trotman’s body, a telltale sign that solved the mystery. Trotman had Cushing's disease, a rare condition that affects fewer than 50,000 people in the U.S. every year.
Trotman’s weight gain was being caused by a tiny tumor at the base of his brain, prompting his body to produce too much of the hormone cortisol. He had some of the classic symptoms: major weight gain in his upper body, skin problems and acne, plus fatigue.
Dr. John Boockvar and Dr. Peter Costantino at New York's Lenox Hill Hospital discovered Trotman had steroid levels ten times higher than normal.
“In Cushing's disease, the pituitary gland has a small growth that releases a single hormone that causes the body to live with very high levels of steroids. The skin becomes very thin. You get increased acne. You can grow hair. You start sweating. You gain a lot of fat,” Boockvar said.
There was no time to lose: Untreated, Cushing's is a fatal disease. Trotman was getting close to the point where doctors would not be able to reverse the changes, Costantino noted. He underwent surgery two weeks ago and had the growth successfully removed.
“The tumor was no bigger than the size of the tip of my pen," Boockvar said. "And that something so small can cause a man to grow to 350 pounds and absolutely destroy his life is rather remarkable."
These days, Trotman is feeling much better. His main focus now is to lose the weight he gained and regain an active lifestyle. He hopes to play basketball with his son soon.
“It's wonderful. Every day it's just like I feel a little stronger,” he said.
Doctors say Trotman will continue to lose weight and can shoot hoops with his son in about three months. There is an 8-10 percent chance the disease could come back, but Trotman said he knows what to look for now.
One of the reasons Trotman wanted to share his story is so others might recognize the symptoms of Cushing's, although doctors stress it is a very rare illness.