19-year-old with rare disease honored

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SALT LAKE CITY -- Despite a relentless disease that's destroying parts of her body, a 19-year-old Utah college student has chosen a path to serve others. She was one of two young women recognized at this year's St. Lucia celebration.

Every Christmas season, the Swedish Society celebrates St. Lucia, an angel-like woman symbolizing light and sustenance.

Those who graduate from the traditional program work hard to reach this point. One in particular has had more than her share of challenges.

Who is... Saint Lucia?
Lucia was a wealthy young Christian martyr, who was killed during the time of heavy christian persecution by the Roman Empire. She refused to marry a pagan and her would-be-husband denounced her as christian and miraculously unable to move her or burn her, the Roman guards took out her eyes with a fork. She was venerated as the patron saint of those who are blind. She is honored in a ceremony on the Sunday closest to December 13 where a girl is elected to portray Lucia. Wearing a white gown with a red sash and a crown of candles on her head, she walks at the head of a procession of women, each holding a candle. The candles symbolize the fire that refused to take St. Lucia's life when she was sentenced to be burned. The women sing a Lucia song while entering the room followed by the singing of Christmas carols.

"In places unreached by sun, the shadows brood. Into our dark house she comes, bearing lighted candles." So goes the words and tradition of St. Lucia as the celebration unfolded at Olympus Junior High School this weekend.

Wearing her crown symbolizes charity, thoughtfulness, hope and new opportunities to serve. In joining her peers, Alex Wallin has chosen her time to shine. Family physician Rebecca Levine, who has kept tabs on this young woman's rare disorder, says, "this is who Alex is and this is who she's always been."

Alex has spent the better part of 19 years fighting to stabilize her body's chemistry.

"It can actually be life threatening for her," Levine says. "Many times, she has come close to having a bad outcome."

Though she looks as normal as other students attending the College of Eastern Utah, Alex's own immune system attacks and destroys the body's glands. Her parathyroid that regulates calcium and other minerals was the first to go. By age eleven the adrenal gland was destroyed -- a disorder called Addison's disease.

We visited Alex on campus. She told us, "Without makeup you could see I have dark eyes right now. That's because I'm recovering from an adrenal crisis I had about a month ago."

Her symptoms include weakness, severe muscle aches and pains, and sometimes not being able to eat, which worsens the condition even more. Alex has to take medications every day to keep her metabolism under control. Without them, "I ache like there is something stabbing me all over my body," she says. "That's what it feels like. It hurts. It makes me cry."

What is... Addison's disease?
Addison's disease is a disorder that occurs when your body produces insufficient amounts of certain hormones, namely cortisol and aldosterone, produced by your adrenal glands. Addison's occurs in all age groups and affects both sexes and can be life-threatening. President John F. Kennedy was one of the best-known Addison's disease sufferers, but it was kept secret during his time as president.

Just the stress of college can trigger symptoms.

According to Levine, "When your body is under stress you make more cortisone. You make more of this chemical, a hormone that helps your body handle stress. Her body doesn't do that."

But despite all this, despite her villain, Alex sees life as an adventure -- part of which is spawned by the very disease that threatens her life. She says, "I'm just fascinated with how I'm able to handle all these things -- how the medical field has been able to make me so I live."

The reality of battling a medical condition is actually why Alex has chosen a medical career. Her goal is to become a registered nurse to help others.

Faith Wallin says her daughter has been determined from the very beginning to fight for survival.

"Anything that she has loved she has gone after and tried it and done it. She has not been afraid of it at all," she said. "She does it with such a sunshine attitude, you might say. I'm proud of her, really proud of her."

"I want to make a difference," Alex says. "I want to be a pediatric nurse and I want to be that one good nurse that makes things -- the tough medical issues these kids are facing, what they're going through -- I just want to be the nurse that makes it better."

In Alex's case, under the umbrella of St. Lucia, that's one who will light the darkness. Incidentally, though it appeared President John Kennedy always sported a nice tan, the pigmentation in his skin was abnormal -- the result of Addison's disease.

E-mail: eyeates@ksl.com


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Ed Yeates


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