2013 Rare Disease Champion Finalist Dillon Reagan

Each of the seven finalists for the Uplifting Athletes Rare Disease Champion Award will have their story featured here. In order to vote for the next Rare Disease Champion, please visit our voting page here. The winner will be announced on February 1st.

Dillon Reagan

Dillon Reagan

College: Humboldt State University

Rare disease connection: Following an outstanding season in which he earned All-California honors at College of the Redwoods, Reagan went through a transformation of his body and psyche that coaches, friends and family couldn’t understand. He went from a muscular 320 pounds to 380, developed symptoms of bipolar disorder, and finally became a near vegetable, suffering from what appeared to be severe clinical depression. As he went in and out of hospitals, no firm diagnosis was found. He also developed diabetes during this time, which actually helped his family doctor reach a diagnosis. During an appointment for diabetes monitoring, the doctor suggested that Reagan had Cushing’s disease. A scan revealed a huge tumor wrapped around his heart and left lung, one that had developed the ability to excrete the hormone cortisol, resulting in his erratic behavior and body changes. Open heart surgery removed the tumor, but his left lung was now useless. Playing football at Humboldt State compelled him to work hard to return, and he reported to training camp in August, just four months after surgery. With a single functioning lung, he started all 11 games this fall, and was named to the All-Great Northwest Athletic Conference team.

His Story: Imagine your life with only one lung. Does the mere thought make you feel short of breath?

Could you imagine walking up and down stairs, let alone suiting up in full pads and playing college football?

Dillon Reagan doesn’t  have to imagine.  He’s doing just that.

It was the summer of 2009 and Dillon was coming off a great freshman season at the College of Redwoods.  In fact, he was named Offensive Lineman of the Year, First Team All-Conference and had gone to the a bowl game.  He couldn’t wait for his sophomore season.  However, he found himself sluggish in the weight room, unable to lift what was easy before,  and he was definitely slower.

“The older guys and the coaches, they definitely noticed,”  Dillon said.  “They started to worry about me.”

The problems went beyond the physical.  Something about Dillon had changed, but he didn’t know what it was.  His coach, however, had a theory.

He thought Dillon was on drugs and his role as a captain of the team was eventually revoked.

Dillon wasn’t on drugs, but had no explanation for his symptoms. Eventually, unable to play football, he went home with his dad. But, even in the comfort of home, things continued to get worse.

Despite assuring his family he was not abusing drugs of any kind, Dillon was suffering delusions, specifically delusions of grandeur. He thought he had a lot of money and power, yet he couldn’t even get out of bed. His weight ballooned from 290 pounds to 380 pounds.

And the source of the problem eluded his doctors. He was given a battery of  psychological exams and he was even admitted to a psychiatric hospital for evaluation after escaping from a prominent Seattle hospital in search of a cheeseburger.

“They couldn’t really figure out the problem,” Dillon explains. “They thought maybe bipolar disorder and they put me on all kinds of medications.”

The medication, however, came with its own problems. The delusions had stopped, but Dillon became incredibly depressed, spending close to 20 hours a day in bed. On top of that, Dillon developed diabetes. It was the low point of Dillon Regan’s life. Amazingly, just when things seemed to be at their worst, Dillon caught a break. A doctor in Washington state finally found the answer.

Dillon was suffering from Cushing’s disease.

“Finally, I felt like we could turn this around,”  Dillon said.

Cushing’s disease is caused by a tumor or excess growth of the pituitary gland. Dillon, along with others with Cushing’s disease, have too much ACTH which stimulates the production and release of cortisol, a stress hormone. Cortisol is normally released during stressful situations and controls the body’s use of carbohydrates, fats and proteins and helps to reduce the immune system’s response to swelling. In many cases, the tumor is the size of a pea.

“Mine was the size of a softball,” Dillon laughed.

Doctors had never seen anything like it; Dillon’s case was extremely rare. When Dillon finally went in for surgery, doctors found good news and bad news. The good news was that tumor was benign, so cancer was not a concern.

The bad news was the tumor was attached to Dillon’s left lung and heart. While the tumor wasn’t cancerous, it had rendered his left lung useless. The grueling surgery left Dillon in intensive care; Dillon had to learn to walk again and even his vision was blurry for some time afterwards.

While the loss of a lung and the prospect of a long recovery may have sidelined most people, Dillon Reagan was determined to be back on the field.

Incredibly, he did just that for the 2011 season.

“It takes me a little longer to warm up and get to game speed,” Dillon said. “But I don’t want to be treated differently than my teammates.”

Dillon finished last year with the College of Redwoods before transferring to Humboldt State in the spring of 2012. With a single functioning lung, he started all 11 games this past fall and was named to the All-Great Northwest Athletic Conference team.

“I feel blessed for every snap,” Dillon said.

Dillon spreads the word about Cushing’s disease at every opportunity he can.  He’s met others on online message boards and offers them hope.

“If there’s anything I can do to help someone who feels even close to how I felt those months, I’m honored to do so,” Dillon said. “Today, I am much more aware of other people’s feelings.”

Dillon Reagan is a kinesiology major with the hopes of coaching someday. That is, after his playing days are done. Chances are he likely won’t have much sympathy for a winded player.

If he can get up and down the field with one lung, they should have no problem doing it with two.

Vote For The 2013 Rare Disease Champion Today!

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