Asked to Write Booklet for Other Young Sufferers : Teen to Tell Story of Battle Against Lupus

Remarkable. Amazing. Incredible. A rebounder.

These are just a few of the words used by friends, family, nurses and doctors to describe 16-year-old Gina Regopolos and her unbeatable spirit in her day-to-day battle with the life-threatening disease called lupus.

With lupus, the victim’s immune system develops antibodies against the body’s own tissues, according to a spokesman for the local chapter of the American Lupus Society. It’s something like being allergic to your own body.

“I call her a rebounder because she has been near death four times this summer and still nothing keeps her down,” Gina’s mother, Judy, said during a recent hospital visit. On that particular day, Gina was volunteering in the playroom of Kaiser Permanente Hospital even though she was in immense pain and discomfort from the latest complications, shingles on the back of her right leg and a fever of 101 degrees.

It was this same spirit that persuaded the Lupus Society to commission Gina to write a booklet for teen-agers about the disease and her experiences in coping with it.

Indeed, Gina with her easy laugh and outgoing attitude gives little hint that for six years she has fought kidney dysfunction, pneumonia, strokes and seizures brought on by the disease.

There are two forms of lupus. The minor form results in a skin rash with raised, red, scaly areas, most commonly on the face. The more serious is systemic lupus erythematosus, or inflammatory rheumatic disease, and is in the same family as rheumatoid arthritis. It can affect one or more of the body’s vital organs, often mimicking heart disease, kidney disorders, rheumatic fever and even cancer.

Lupus mainly attacks women in their child-bearing years, but it has been known to strike men.

“Gina has a particularly severe form of lupus that has attacked her kidneys and caused some damage,” Gina’s physician, Dr. John Scavulli, said.

She also is plagued by fatigue and must restrict her exposure to the sun because the sun’s ultraviolet rays aggravate the disease, said Scavulli, a rheumatologist with Kaiser Permanente.

In dealing with such limitations, Gina has learned the beauty of compensation. She has taken up indoor roller skating, going to the movies, swimming at night and various other nighttime activities. She plays board games with her parents and 20-year-old brother and has been with the Christian Youth Theater for five years.

When she does go out on a sunny day, she has to make sure she’s covered as much as possible--wearing long sleeves, long pants and a hat.

“This was where my struggles began. I was always short, but I had learned to compensate through sports,” said Gina, standing 4-foot-7. “I loved soccer, horseback riding, swimming and softball. Not being able to go out in the sun was the hardest to face.”

The ever-optimistic El Cajon teen says it’s not so bad anymore. “The water slides at night are really great, and there are other things to do that don’t require long exposure to the sun.”

Maintaining her educational development while faced with long breaks for hospitalization has been tough. However Gina, a junior this year, has managed to keep up the pace. She maintains a full class schedule, attending Valhalla High School for three classes and having a home teacher for three other classes.

“The school and Grossmont school district has just been great,” said Judy Regopolos, who was diagnosed as having multiple sclerosis a few months after Gina learned she had lupus. “They’ve given her a pass to use the faculty elevator because of the pain in her joints and provided her with a home tutor.”

Gina plans to attend Oral Roberts University in two years and will concentrate on becoming a hospital child life worker. A child life worker tries to ensure that a child’s hospital stay is not psychologically detrimental. Gina said her many hospital stays helped her make her career choice.

To fight the complications caused by her kidney dysfunction and the disease, Gina takes 12 pills in the morning and six at night along with nine other medications.

“If I didn’t take them, I wouldn’t be able to get out of bed because I’d be tired and achy. . . . I wouldn’t be this perky or healthy,” she said.

“Some of the medications Gina is on suppress her immune system, therefore opening her up to a number of life-threatening infections,” Scavulli said.

Gina, who was in the sixth grade when she was diagnosed, will admit that at first she could not come to grips with her disease.

“My mom and I noticed a bright red butterfly rash, across my cheeks and the bridge of my nose, so we went to the doctors,” Gina recalled.

“I was angry, upset and discouraged, but basically just scared,” Gina said. She withdrew into herself, shutting out friends and family. “It took about 3 1/2 years for me to adjust and only because of some good Christian friends and family who stuck by me even though I would cut them off.”

Gina said it took her three years to “finally realize that I need to be positive and not to get upset or too mad because I can’t change it.”

She said what had made the situation worse was that no one told her anything.

“They didn’t tell me it was life-threatening,” she said, “but I overheard mom talking on the phone with the doctor one day.”

“I feel you should tell your kids everything because it is affecting them and they are old enough at that age to know and understand,” Gina said, adding that her parents didn’t tell her until three years after diagnosis, when her kidneys took a turn for the worst.

Because she believes other teens can learn from her experiences, Gina says she is looking forward to writing the booklet for the Lupus Society.

“It’s hard enough for kids in that age bracket when a pimple on the nose is the end of the world, much less having a disease and taking medication that make you look bloated and disfigured,” said Kitty Monez of the society.

“In a disease where there are long periods of hospitalization both from disease and affects of treatment, the Regopoloses are a good example of how, under the worst of circumstances, family support and maintaining a high level of spirit have helped,” Scavulli said.

Although not many have heard of it, lupus is now known to be more common than multiple sclerosis, muscular dystrophy, cystic fibrosis and leukemia, Monez said. Current estimates of the Lupus Society show that about 1 million Americans have the disease.