Sean Letsinger has spent much of his life enduring intense workouts and competitions as one of the nation's elite young divers.

Those experiences did nothing to prepare him for the disease that gradually overtook his body and has changed his life forever.

Letsinger, 19, who signed a scholarship to dive for the University of Tennessee and enrolled as a freshman last fall, was diagnosed last November as having Wilson's Disease.

The rare genetic disease has derailed Letsinger's diving career, for now, but the early diagnosis possibly saved his life when he immediately went for treatment last fall at the University of Michigan Hospital, the world's leader in treatment for the disease.

"In the blink of an eye, I had to move out of the dorm, withdraw from classes, take what incompletes I could, and then head to Michigan and leave everything else behind," Letsinger said.

Letsinger, a three-time state diving champion for Catholic High School, and his family have tried to learn everything they can about the disease.

"They estimate 5,000 to 6,000 people in the U.S. have the disease and a lot of those go undiagnosed and untreated," said Sam Letsinger, Sean's father. "It's always fatal (if untreated) by the time they're in their 30s. It's a freaky genetic disorder."

Sean Letsinger can calmly describe the disease and its severity.

"Wilson's Disease is where my body doesn't release the copper from the foods I eat," Sean said. "It won't take the copper out when I go to the bathroom, so it stores up in my body and causes cirrhosis of the liver, brain damage and ultimately death."

If not for the disease, Letsinger likely would have been one of the competitors in this week's U.S. Olympic diving team selection camp at UT's Allan Jones Intercollegiate Aquatic Center.

He is still there every day, watching the competitors. Many of them are his longtime friends from diving meets.

Being a spectator is not easy.

"I've been to meets with them all throughout my diving career," he said, "and it's a real bummer I'm not here to compete with them. I wish all of them could make it, but whoever does, I'll be happy for them."

Looking for correct diagnosis

It took years for Letsinger and his family and ultimately doctors to figure out what was happening to him.

The early symptoms were subtle.

His speech became a little slurred. He had trouble concentrating and focusing. He had slight tremors .

Those symptoms started several years ago while he was attending Catholic and competing at the highest levels in diving.

"My body wasn't really doing what I was trying to tell it to do," he said. "I was spacing out a lot more, kind of zoning out, and my friends, especially the people on the diving team who I was around every day, they'd wave their hands in front of me and say, 'Sean, pay attention, snap out of it.'

"That happened really for about three or four years."

Letsinger thought he may have Attention Deficit Disorder, but those tests always came back negative. He also passed off the symptoms as being part his body's growth process, getting bigger and stronger.

His slurred speech continued to get worse, as did the other symptoms.

"I never went to speech therapy, but a lot of the time my mom would say, 'Sean, talk clear, you're slurring,' so I'd work on it but it kept getting worse and I wasn't doing anything different," he said.

An incident last fall eventually led to the correct diagnosis.

Letsinger was enrolled at UT, living in Gibbs Hall, and working out with the diving team.

At 5:30 one morning in early October, Letsinger was lifting weights. When he was finished, he asked UT strength coach Johnny Long if he could go to the training room to ice his knee, which was hurting from tendinitis.

Letsinger put his knee in an ice whirlpool and immediately passed out.

The incident was caused by Letsinger's not having eaten that morning and then doing a heavy workout, which caused his blood pressure to drop.

"I went to the doctor to make sure I wasn't epileptic because UT didn't want me to seizure out in the middle of a dive," Letsinger said. "So we checked with the neurologist and they did an MRI of my brain to see if I would be epileptic."

The MRI results were chilling.

"It came back with an abnormality like deterioration, kind of brain damage that was typical of either drug users, chronic drug users, or Wilson's Disease, an extremely rare genetic disease like anyone hardly ever has," Letsinger said. "So naturally me being a teenager, or just a young male, they figured I was on drugs."

UT began multiple random drug screens on Letsinger. All came back negative.

"I mean, obviously I didn't do drugs," he said.

So doctors began testing for Wilson's Disease.

One of the tests was for copper deposits in his eyes. They came back positive as did all of the other tests.

Dropping diving for a cure

The positive diagnosis came in early November. The Letsingers were told to have Sean at the University of Michigan Hospital in three days to start immediate treatment for the disease.

Letsinger e-mailed his UT professors and told them the circumstances and that he would be withdrawing from classes and taking incompletes, except for Calculus, a course in which he had an A grade and would complete on his own and take the final exam.

He was forced to drop out of Psychology and other classes. All the classes he had attended and all of the papers he had written were for naught.

"That was hard for me to deal with, and then besides that, dropping diving," he said. "I've been diving every day for close to eight or nine years at that point, so that's just like my life. It was almost like leaving everything behind and hoping it would be there when I came back, but at the same time, if I hadn't gone up there and been treated, it would have gotten a lot worse and I wouldn't have been able to dive (again)."

Doctors at Michigan Hospital immediately started Letsinger on a trial drug, Tetrathiomolybdate, which flushed massive amounts of copper from his body when he urinated. The trial drug is not FDA-approved and Letsinger said he is the last person to take it.

While taking the trial drug, Letsinger was also taking zinc acetate, or zinc salt, which blocks the copper from being absorbed in the intestinal tract. This action depletes accumulated copper and prevents its re-accumulation in the body.

Letsinger spent six weeks at Michigan Hospital. Most of the time he was being tested, but he was allowed to occasionally do some basic, modified diving practices at the University of Michigan and the University of Eastern Michigan.

After six weeks in Michigan, Letsinger moved back home with his father, mother, Lee, and sister, Katie, a senior at Catholic this fall.

He stopped taking the trial drug after 16 weeks, but has continued taking the zinc salt. His diving diminished while he watched his friends and competitors improve.

Letsinger says the entire ordeal left him bitter at first.

"Despite how bitter I was about all that," he said, "I mean, it's better than the alternative, having not discovered it, keep training, keep declining, my friends are still going to get better than me, and then when I'm finally diagnosed, I won't be able to dive. This way I have a chance to come back and make the best of it."

Change in lifestyle

His lifestyle has changed drastically, in large part because of the zinc pills he must take three times a day. He says the zinc salt is a much slower, gentler process of ridding his body of the copper than the test drug.

Letsinger must fast for two hours before taking each pill and fast for one hour after taking each pill, so he can only eat at certain times of the day. He can no longer eat power bars or drink energy drinks because of their high amounts of synthesized copper, which in Letsinger's case is more damaging to him than natural copper.

He will take the zinc pills for the rest of his life.

"The way I understand it, if I ever stop taking the medication, within about three months I'll be dead," Letsinger said. "It's just over, so I'm life dependent on the zinc."

Letsinger says he can tell he's improving, but is not the same as he was as a 14-year-old diver. At about that time, Letsinger earned a fifth-place finish in the 2003 Junior Olympic Pan-American Games in Belem, Brazil.

Also on that team were Thomas Finchum, Nick McCrory, Drew Livingston, Ariel Rittenhouse, Kelci Bryant and Mary Yarrison - all competitors in this week's selection camp at UT.

Letsinger will re-enroll at UT this fall and plans to start workouts with the team. He also coaches young divers in the area, working with UT diving coach Dave Parrington, also his club coach.

Letsinger says he will try to get back to the highest levels of diving.

"I'm going to make a go of it and I'm going to try to do well for my collegiate career and I'm going to try to dive in USA Diving as well, but my aspirations are more looking at being a diving coach right now than a diver," he said. "But to be a good diving coach, you have to be a good diver and draw experience from competition, the pressure situations. I'm going at it more from this angle right now, but that doesn't mean I'm not going to compete. I am going to try to improve."

© 2008, Knoxville News Sentinel Co.