KANSAS CITY, KAN. ? Dr. Jared Grantham’s first contact with polycystic kidney disease had nothing to do with a laboratory.

While growing up in Johnson, near the Colorado border, Grantham traded comic books with a boy who had the disease. He learned in high school that the boy had PKD when he discovered the boy was urinating blood after football practice.

At the time, Grantham didn’t know anything about PKD — just as many Americans don’t today. That still amazes Grantham, considering the life-threatening disease is more common than cystic fibrosis, sickle-cell anemia, hemophilia, muscular dystrophy, Down syndrome and Huntington’s disease combined.

“People don’t know about PKD,” he said. “It’s one of the better-kept secrets of the world.”

Grantham has spent his life trying to change that. Now a researcher at the Kansas University Medical Center, Grantham is being honored for a lifetime of research on PKD with an international prize and a $50,000 check.

He’ll travel to Berlin next month to receive the first-ever Lillian Jean Kaplan International Prize for Advancement in the Understanding of Polycystic Kidney Disease. The award will be presented annually by the PKD Foundation, based in Kansas City, Mo., and the International Society of Nephrology.

The inaugural award will be shared between Grantham, one of the first to conduct PKD research, and Dr. Peter Harris of the Mayo Clinic in Rochester, Minn.

“I’m proud because it’s grown to an international level,” Grantham said. “I think this Kaplan Award will be good to raise even more awareness.”

‘Early champion’

Grantham decided to study medicine while in the hospital with polio at age 14. After graduating from Baker University in 1958, he earned a degree from the KU School of Medicine in 1964. He then spent five years on a National Institutes of Health grant to be trained in kidney research.

He started working on PKD as a KU faculty member in 1969.

PKD is a genetic kidney disorder affecting an estimated 10 million to 15 million that leads to numerous cysts on kidneys. The cysts slowly replace the kidney itself, leading to kidney failure that requires a transplant. If it’s not treated, PKD can be fatal.

At the time Grantham started, he said he was one of only about five researchers working on PKD-related problems. Now, there are about 300 worldwide.

“He was one of just a handful of people in the early days who recognized PKD as something unique that was of concern to him, and he wanted to try to solve the problem for the patients,” said James Calvet, a professor of biochemistry and molecular biology at KU. “I’d characterize him as being one of the early champions trying to tackle the disease by carrying out basic research.”

Over time, Grantham, 67, has made several key discoveries about kidneys, including that the blood-filtering organs secrete their own fluid in addition to absorbing fluid. That secretion helps lead to the cysts that cause PKD.

His research laid the groundwork for a boom in kidney research at the Med Center. There are now about 25 PKD researchers on the campus.

And crews are working to remodel two floors of Wahl Hall at the Med Center to create a permanent home for KU’s Kidney Institute. The institute’s researchers currently are spread out on campus. Grantham secured a $1.95 million grant for the project in 2000.

Patient advocate

Grantham also has become an advocate for PKD issues. In 1982, he co-founded the PKD Foundation with Kansas City businessman Joseph Bruening, whose wife had the disease. The foundation now awards more than $2 million a year in research grants to kidney researchers.

Nancy Jehl, Topeka, has seen Grantham’s work as a physician and PKD champion first-hand. Jehl was diagnosed with PKD in 1982, and she was a patient of Grantham’s until she received a kidney transplant in 1998.

“He is so passionate about his work and so committed to his patients,” Jehl said. “He always had time. No question was too small. And he always had this upbeat attitude.”

Jehl’s mother died of PKD at age 48. Jehl didn’t know she had the disease until a doctor noticed kidney cysts during a hysterectomy.

“For me, I was very fortunate,” said Jehl, 68. “A lot of people had pain, but I didn’t have any pain. It was basically fatigue and leg cramps — outrageous leg cramps.”

Jehl said kidney research under way has given families afflicted with PKD new hope.

“It’s really to Dr. Grantham’s credit,” she said. “Dr. Grantham was the one with the passion and force behind getting the NIH to fund PKD research.”

Search for treatment

Grantham approaches PKD from a clinical standpoint to describe the cysts he sees in patients. A separate group of researchers is mapping the genetics of the disease.

Eventually, he says, the two types of research will converge to produce new treatments. He compares that convergence to the golden spike that was driven on the cross-continental railroad.

“Curing the disease is going to be difficult because the genetics are complicated,” he said. “If we can slow it down, that’s what we want to do. Cancer researchers are taking the same approach. You’re not hearing as much about curing cancer now as treating cancer.”

In his spare time, Grantham writes children’s books. He had his first, “Ashley and the Mooncorn People,” published last year by Leathers Publishing in Leawood. His granddaughter, Ashley Houchin, lent her name to the story. He has another book in the works.

Grantham said he eventually would like to retire, but he has NIH funding for two more years of research. After that, his retirement schedule may depend on how close he is to an effective treatment for PKD.

“If we’re not there yet,” he said, “it will be a sorrowful departure.”