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Rarely diagnosed disorder disrupted a life

 

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Take a look at the 24-year-old man standing before you. He appears "normal."

His 6-foot-2-inch, 215-pound frame screams athlete. The well-groomed, light brown goatee is distinct, especially with the man's shaved head.

His smile suggests happiness.

Take another look, but this time probe deeper.

His hands are trembling. With his shoes off, you see that he has flat feet. Upon closer examination, you notice his arms, slightly longer than the average person of his build.

You'd never know by looking at the man, handsome, newly married and ready to attack life, that there's an extra female chromosome swimming in his body's cells.

You'd never know that this additional spaghetti-like strand of genetic material prevented the man from developing muscle tone earlier in life and made him so depressed he attempted suicide five times.

This is Tim Vigliotti and he lives with Klinefelter syndrome, a genetic disorder which keeps his body from producing the male sex hormone testosterone.

The syndrome is also known as XXY, the additional X denoting the extra female chromosome. Male chromosomal arrangements are ordinarily XY. Other possible symptoms include delayed speech, anxiety, enlarged breasts and the inability to grow facial hair.

According to the American Association for Klinefelter Syndrome Information and Support, the disorder occurs in about 1 in 500 births, a total of about 250,000 cases nationwide.

Most go undiagnosed.

"We are really pushing for mass screenings of individuals, but we've been told this isn't cost- effective," said Roberta Rappaport, the founding president of the 3-year-old nonprofit organization.

"Our second approach is when you have a child not kicking in the way you expected, then maybe you should do a chromosome analysis," she added.

Young men like Vigliotti can go years, sometimes their entire lives, without knowing what is wrong with them, Rappaport said. Adopted at 5 weeks old, Vigliotti learned he had Klinefelter less than two years ago.

He was 23 and went to his parents for help. The situation was dire, as Vigliotti had spent the last five years in an emotional rut.

After he graduated high school in Scobey, Vigliotti's parents, Pat and Patty, moved back to Havre to be closer to their other son, Tony, and his children.

Tim Vigliotti, a two-sport star in baseball and football, went off to the University of North Dakota-Williston.

Two weeks later, he was home. Drugs and alcohol and sexual promiscuity, Vigliotti said, came before the books.

"I quit school. I couldn't take it anymore," he said. "There was a lot of stress on me. I just had to get away."

"I was trying to make a name for myself, but doing it in the wrong way," he added. "I was giving myself a bad name."

Upon returning to Havre, Vigliotti said he continued the drinking and drugging and partying. He had several jobs. None lasted long.

"I know now that Klinefelter had something to do with that," he said. "I'd wake up and not want to go outside. I turned into a nocturnal person, sleeping all day and going out at night."

This lasted five years.

During this time, Vigliotti's parents sent their son to counseling, to various psychiatrists and psychologists.

"None of them seemed to work, mainly because I didn't give them the chance," he said. "I'd show up at the psychologist high."

The doctors diagnosed Vigliotti with manic depression and filled his body with antidepressants, he said. Nothing worked.

The family didn't know where to turn or who they should turn to. Their son was desperate. He had already tried to hang himself and overdose on pills.

Vigliotti was admitted into Montana State Hospital at Warm Springs.

"You hate like hell to see your kid in an institution like that," Pat Vigliotti, 60, remembered. "It stigmatizes them."

But the family was at the end of the proverbial rope.

"We didn't know what to do," Pat Vigliotti said.

"He used to say, I don't really want to die. I want help,' Patty Vigliotti, 59, added. "He got to the point where he thought he was a bad person."

The day after he entered Warm Springs, Tim Vigliotti discovered that he's not.

A doctor at the hospital, Raj Menhaus, gave Vigliotti a routine examination. What he found was anything but routine.

Menhaus discovered that Vigliotti's testicles were much smaller than that of a "normal" man. The doctor asked Vigliotti if he had ever heard of Klinefelter. He hadn't.

Menhaus examined his patient's blood. A week later, he diagnosed Vigliotti with Klinefelter and gave him a shot of depotestosterone.

Vigliotti woke up. Literally and figuratively.

"That very first shot, the next day when I got up in the morning, I was a brand new person," he said. "The feelings of wanting to die and not caring and just not having a purpose in the world disappeared."

Vigliotti's mood changed. His life was back on track. It had meaning. He wanted to go back to school.

"Now, I can deal with everything. Nothing's too big to deal with," he said.

Gone from Vigliotti's life were the drugs and alcohol. No longer did he lack self-esteem, no longer did he want to end his existence.

"Things are way easier," he said. "My worst day clean and sober is better than my best day drunk and high."

Patty Vigliotti recalled the morning after her son received his first testosterone shot.

"He called and said, Mom, I'm not a bad person. I'm a good person,'" she said.

He described the aftermath of the first shot as coming out of a dark tunnel, Pat Vigliotti added.

"That one hormone affected his whole body," Pat said. "It's a big relief. We always thought when something came up, Can he handle it?'"

Tim Vigliotti always knew he was different. At 14, he began locking himself in his bedroom and not coming out for hours.

"I always knew something was wrong or something was messed up because I wasn't the same as other kids," he said. "But I really didn't notice anything specific until I went to college when I was 19."

Unlike many men with Klinefelter, Vigliotti was athletic. The syndrome, according to doctors, inhibits muscle growth, and in many cases causes obesity.

Vigliotti wasn't just an athlete in high school. He was all-state in football, where he played defensive end and was a punter. He also pitched for the Scobey High baseball team.

He lifted weights like the rest of the guys, Patty Vigliotti said, but couldn't produce muscle.

"I was more athletic than everyone in my class, and taller," Tim Vigliotti said. "But lifting never worked."

Drugs and alcohol didn't play a role in his high school life, Vigliotti said. Confusion and depression did.

"I started acting like I didn't belong. I was searching for my identity," Vigliotti said.

He'd analyze things, sometimes too much. He'd worry. He'd have panic and anxiety attacks from the stress.

The pressure reared its head particularly when he was taking tests in school, a task that many times caused Vigliotti to struggle.

"I don't know what it was, but I still feel the same way," he said. "I don't like being around people when I'm taking tests. I need total silence to concentrate."

His senior year, Vigliotti asked if he could take his exams alone. He saw immediate success.

"When they sent him to take tests in the library, he was on the honor roll all year," Patty Vigliotti said.

"His other school work was good," she added. "Now that we know the problems he had, we're amazed at how well he did."

Tim Vigliotti had difficulty reading in first grade. The teacher told the Vigliottis their son would always be a C student.

In second grade, his parents held him back, they said, because the teacher said their son was "lazy and didn't have learning disabilities."

"She already had him pigeonholed," Pat Vigliotti said.

Part of the problem, according to Rappaport, is the way those with Klinefelter process information.

"It goes into this person's head but they have a very difficult time giving you the feedback you're looking for sometimes," she said. "When they get into school, the problems become more apparent. But their intellect is average to above average."

As a teenager, Tim Vigliotti attributed his academic troubles and general confusion to his adoption. Yet it wasn't until he was 23, at Warm Springs, that Vigliotti learned he inherited Klinefelter from his birth father.

"I think the reason why I felt I was different was because I was adopted," he said. "I didn't look like my parents or my brother. I was always looking for somebody who looked like me."

Vigliotti married Heather Roylance on May 9. Because of the syndrome, the couple can't have children of their own.

Klinefelter, Heather Vigliotti said, had no impact on her decision to marry Tim, but sometimes does have an impact on their marriage.

"He still does have mood swings. It's hard to deal with it because I'm so used to how normal people think," she said. "The way Tim hears and understands things is different than how you hear and understand things."

Once a week, Heather Vigliotti gives her husband his testosterone shot, alternating hips each time. The 26-year-old said she notices the little things caused by the chromosome-altering syndrome.

"Because I know he does have Klinefelter, there's little things about him, like his poochy tummy he has a hard time getting rid of," she said. "But Tim is pretty healthy, so he's lucky."

Patty Vigliotti spends time educating her daughter-in-law about the effects of Klinefelter.

"My mom kind of tells her what's going on and I try to talk to her as much as possible," Tim Vigliotti said. "I just tell her I have bad days and good days."

On Aug. 2, the Ronan couple is moving to Glendive where Heather Vigliotti will look for a job. Tim Vigliotti, who works now doing golf course maintenance at Mission Mountain Country Club, is going back to school. He'll study English. He wants to be a teacher.

His wife said he's ready.

"I think now that his head's on straight, he'll do well," she said.

Tim Vigliotti, who will also play baseball at Dawson Community College, is just as confident.

"I don't have any doubts about school," he said. "My mom told me I should work on getting a 3.0."

He paused.

"I think I'll get a 4.0 just to make it safe."

 

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