LIFE GOES ON These teens won't let illness get them down

THE BALTIMORE SUN

What 15-year-old Tim Boyd would really like to do is run a mile, in really good time.

It's not likely that he ever will: Tim was born with a serious heart defect that's been improved by surgery but not entirely corrected. According to his mother, Millie Boyd, he gets tired just walking from the Aquarium to the Science Center.

But there's a lot Tim can do and enjoy: He goes to school and Sunday School, he takes as much of gym class as he can, he plays guitar and baritone horn, goes to parties and hangs out with his friends.

It isn't always easy: Chronic illness is tough on a teen. It can limit activities, threaten life, cause physical deformity, and social embarrassment.

"It makes them dependent -- on medication, on the hospital and physicians, on their parents to get them to the doctor -- at a time when they're struggling with independence," says Dr. Marianne Felice, director of adolescent medicine at the University of Maryland Medical Center.

It can be awkward. "Most of our kids have bathroom stories," says Teri Jackson, R.N., nursing coordinator of pediatric gastroenterology and nutrition at the Johns Hopkins Children's Center. The youngsters she works with have bowel disease; they have painful cramps and bloody diarrhea and may have to run for the bathroom in the middle of class, during a movie, while out on a date.

It can leave them smaller, shorter, weaker than their peers. It can force them to think about death while everyone else is thinking about happy-ever-afters. It can make them feel different, when they want most to be the same as everybody else.

They can become angry, resentful, depressed, rebellious.

Or they can turn into really neat kids who enjoy the life they've got.

"At the positive end, when they're handling it well, they see it as a part of themselves, but not the major part of themselves; they perceive it as a piece they have to deal with, not the total self. They think, 'I am Johnny Jones and I have a bad heart,' " says psychologist Leon Rosenberg of the Johns Hopkins Children's Center.

"The youngster will always be somewhat regretful of things that interfere; he'll be unhappy about the way the illness interferes with A, B and C, but he'll still get pleasure from D, E and F. The kid has a good self concept; the chronic illness has some boundaries around it."

In fact, while chronically ill children generally need a lot of help from families, friends, doctors, nurses, and counselors, most of them grow up without a lot of emotional damage, according to Dr. Felice. "Adolescents are always resilient," she says. "They incorporate their problems as part of growing up, and with support, they do OK."

Here's how three are managing:

* Tim Boyd's heart, at birth, contained only two chambers instead the normal four; he also had no spleen, an important component of the immune system.

A series of operations, the most recent three years ago, has improved his cardiac function, but he still tires easily and needs a variety of drugs, including a diuretic to get rid of the fluid his heart isn't pumping out, and an antibiotic to protect him from infection.

"Usually, I'm reluctant to tell people about it; I'm uneasy that they might judge me differently, that they'll think I can't do things," says Tim, a 6-footer who looks like a kid who can do anything, according to his mother Millie Boyd.

"He works hard to be part of things," Mrs. Boyd says; and that means he's had to explain and negotiate in school -- in order to leave the classroom, unhassled, when the diuretic kicks in during first period class; in order to take gym and join the marching band, but drop out when he can't go on.

But some things are not negotiable: Last June, Tim found he could not go with his church group on a trip to Colorado. This winter, Tim found something else he could do: His older brother took him skiing in the lower altitude of the Poconos.

Yes, his parents were worried, his mother says. "But we've been told he can do anything he feels like doing. His body will let him know when he can't do it any more."

* Danielle Easom of Anne Arundel county was 14 when she came home from Ocean City with debilitating fatigue and the butterfly-shaped rash that is the classical symptom of systemic lupus erythematosis. An auto-immune disease that can attack skin, joints, internal organs and blood vessels, lupus is brought under control with steroid drugs; the high dose needed that first summer thinned her hair and ballooned her body and turned her first year of high school into a nightmare.

"I was teased unmercifully," says Danielle, now 18. "At first, I pulled into a shell. "I asked, 'Why me? Why is it happening to me?' I didn't want to talk to anybody, I pushed everybody away. . . I had to go into counseling."

It helped. So did her parents, she says, and the good friends who stood by her through the rough times, and the fact that the drug dose was reduced and her appearance improved. "The same guys who were making fun of me in the ninth grade were asking me out in the 10th and 11th," she recalls.

She still has lupus, of course; she'll always have to face the fact that it can flare up and attack, that she'll always have to be careful about sunlight and stress, which can make it worse.

"You get tired, and then upset because you can't do everything you want to do," she says. "My kidneys are involved, and that's really scary, because I've been reading about people with kidney failure. The arthritis is a pain, too; you think, 'Omigosh, you have arthritis, and you're only 18.' It doesn't bother me a lot, but when it does it can get so bad I can't really move.

"I can't plan ahead, because I don't know how I'm going to be feeling."

Still, she's been able to get on with life. She has a steady boyfriend and a full-time job, and attends Anne Arundel Community College part time, aiming for a degree and a career in business.

*

Matt McBride was 15, at the end of his sophomore year at Chesapeake High School in Anne Arundel county when ulcerative colitis (or inflammatory bowel disease) erupted. For the next four years, he was maintained, for the most part, on steroids, although the disease would periodically exacerbate. "When it did, I was constantly running back and forth to the bathroom, missing class every so often. I missed my senior year wrestling season because my colon was so badly inflamed. I was a little angry about that, but I knew I couldn't do it; putting myself under that kind of stress would make matters worse."

Matt faced his illness head on, explaining to friends who were, he says now, with him all the way. "They would crack jokes about ulcerative colitis being a pain in the butt, and some other, ruder, things, but it was all in fun, and that made it easier."

Last spring, during Matt's freshman year at the University of Maryland College Park, the disease hit him with exceptional force; drugs could not provide long-term relief from the bleeding, and the doctors proposed a colostomy.

"I was prepared for it. I had been psyching myself up over three years, knowing sooner or later it would have to be done."

"To tell the truth, I feel sort of different. When you have an ostomy, it's like you're hiding something. I know you can't really tell I have it, but trying to convince myself of that is kind of hard."

Yet, Matt is back at school, studying engineering and living in the dorm with a long-time buddy who's been understanding and supportive since the disease began. Recently, Matt went to the Hopkins support group for teens with bowel disease and was pleasantly surprised to find he could not pick out the ones who, like him, had ostomies.

For more . . .

For information about the Johns Hopkins support group for adolescents with bowel disease, call 955-8769.

Hopkins also has a support group for teens with cancer: Call 955-8124 for information.

Or call the voluntary organization devoted to the particular disease:

The Maryland Lupus Foundation, at 366-7272.

The Maryland affiliate of the American Heart Association, at 685-7074.

The Crohn's and Colitis Foundation of America, at 486-9501.

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