February 2, 2004

65 roses

By Eric Rangus

For more than 30 years, Daniel Caplan has fought 65 Roses. Sounds more like a job for a botanist rather than a pediatrician like Caplan, but floral references aside, he is a good man for the job.

Exactly how did this fight begin? The story goes like this.

In 1965, Mary Weiss of Palm Beach, Fla., became a volunteer for the Cystic Fibrosis Foundation after learning her three little boys had inherited the genetic disorder. For those suffering from cystic fibrosis (CF), a defective gene causes the body to produce an abnormally thick mucous that clogs the lungs and leads to life-threatening lung disease. It also can damage the intestines and pancreas. There is no cure.

Few adults had CF since few people with it lived long enough to even get a driver's license. In the mid-1960s the average lifespan of a child with CF was 12-15 years.

As part of her volunteer responsibilities, Mary would call up social organizations and civic clubs asking for financial support for CF research. Watching his mom and listening intently was her 4-year-old son Richard.

When his mother completed one of her calls, Richard announced that he knew what she was doing. What? She asked him, knowing that he did not understand what CF was.

"You're working for 65 Roses," he said, offering up his own translation of the disorder. 65 Roses, now trademarked, has become the symbol for the fight against CF, and while there is no cure, treatment has improved. The average lifespan of someone with CF is now in the mid-30s.

The battle is fought on the Emory campus as well, and the main weapon is the Cystic Fibrosis Center at Children's Healthcare at Egleston, located at the corner of Clifton and Houston Mill roads across the street from the Nell Hodgson Woodruff School of Nursing. Caplan, its medical director, has been treating CF patients and researching ways to combat the disorder since 1968.

"A lot of people don't understand what the name means," said Caplan, professor of pediatrics. "That's been a problem over the years. With muscular dystrophy, for instance, you can see a child with Jerry Lewis. The foundation is trying to raise money for research. They don't raise nearly enough money as other types of disorders, and the answer to this disease is going to come from research."

In Atlanta, the primary CF fund-raising event is the 65 Roses Ball. The 19th annual black-tie ball was held Nov. 1, and it raised $200,000 for the Cystic Fibrosis Foundation (CFF). This year, the Georgia Chapter of CFF honored Caplan for his career-long devotion to his patients.

"I was taken aback," said Caplan, who first was asked to be honorary chairman of the committee that sets up the ball, only to be told later that he was the one to be honored. "I was pleased, but I'm uncomfortable being the center of attention."

The attention, however, is quite deserved. Caplan is director of one of the 10 largest CF centers in the country and the only free-standing one. He is a member of the board of directors and chairman of the medical advisory board for the Georgia Chapter of CFF, and he is president of the board of directors of Community Advance Practice Nurses, a group of nurse practitioners that runs a free clinic for needy homeless and youths in southeast Atlanta.

Trained as a gastroenterologist and nutritionist, Caplan spent a lot of time in the CF clinic at the Yale University School of Medicine, where he trained. In addition to affecting the lungs, CF can severely harm a patient's digestive tract. That work moved him toward CF.

In 1968, he joined the School of Medicine faculty and was named director of the Cystic Fibrosis Center at Egleston Children's Hospital. Back then, the center had about 70 patients. Now it follows about 500 patients, some of whom Caplan has seen for more than 30 years, something that would have been unheard of without the medical advances of the past few decades.

"Seeing people that many years, they become a part of your family and you a part of theirs," Caplan said. One of his patients, Knox Bennett, drew a color-pencil portrait of Caplan that hangs next to the elevator just outside the second-floor conference room.

Many other patients and their families have bought him turtles--Caplan collects the amphibians. When he moved to Atlanta, he owned a three-legged box turtle, a pet he kept for 13 years. For a time, there were five turtles living in his apartment. Word got around, and eventually people began buying him replicas of the creatures. Ceramic, glass and wooden turtles are scattered around the center, and Caplan wears three turtles of various sizes pinned to his labcoat.

"They're not afraid to stick their necks out," Caplan said about why he admires the creatures. "And they've got longevity." The double meaning between the animal and the doctor's work is easy to pick up.

The center moved to its current location in 1995 in response to Egleston's growing CF population. It is home to three full-time physicians (including Caplan), two full-time nurse practitioners, two full-time nurses, a full-time respiratory therapist, a nutritionist and a social worker.

The third floor of the building is a 10-bed in-patient clinic, the second floor is the outpatient area, and the first floor features equipment for physical therapy (treadmills and the like) and games like a foosball table. Most CF patients are, after all, children.

"CF is the epitome of what a chronic disease is and how it affects families," Caplan said. "In many ways, it's one of the worst diseases you can ever have because it doesn't get better."

Caplan's treatment focuses on how CF sufferers can have a good quality of life despite the fact that they often are smaller than their peers and become sick very easily.

"They teach you how to live," he said. "They can still function in the world, go to school, have friends. They accomplish so much."

Caplan recently fought a medical battle of his own. In May 2002, he suffered a stroke and lost the use of his left side for a time.

"Male doctors are the worst patients," he said. Caplan came back to work full time last February, and while he still walks with a limp and has limited use of his left arm, is back to full health otherwise. "I had a reputation as one of the worst writers in the medical school," he said. Writing and using a knife were the only things he used to do left-handed; Caplan now writes with his right. "And my handwriting is a lot better."

He certainly hasn't lost his sense of humor. A native of Massachusetts, Caplan is a big baseball fan, but not of the Boston Red Sox (more than 30 years in Georgia has switched his allegiance--albeit a frustrated one--to the Braves).

"I was rooting against the Red Sox," he said in what is still a relatively thick New England accent. "I have two brothers who live in Boston, and I wanted to be able to send them sympathy cards.

"They always do it to me when the Braves lose."