'Grey's Anatomy' Features Rare Disease on Three-Episode Series

Feb. 10, 2011 — -- In a multi-episode arc on "Grey's Anatomy," actor Scott Foley plays a von Hippel-Lindau (VHL) patient, diagnosed with a dangerous adrenal tumor.

Doctors at the ABC show's fictional hospital, Seattle Grace, know that the tumor needs to be removed, as it can cause sudden bursts of adrenaline at random intervals, leading to panic attacks, racing heart beats, high blood pressure, heart attack or stroke. But the patient has maxed out his insurance.

"Something we've wanted to do on 'Grey's' is portray someone living with a chronic disease instead of dying from one," Dr. Zoanne Clack, co-executive producer of "Grey's Anatomy," wrote in an e-mail to ABC News. "We wanted to show that a patient living with chronic disease can be just as full of life, just as 'normal' as someone who doesn't live with one, but obviously has different issues and concerns."

So far, Joyce Graff, executive director of the VHL Family Alliance, is pleased with the portrayal of the rare disease.

"It's an interesting premise, and so far has been presented in an accurate and fair way," said Graff. "I like how they're giving us time to get to know this guy and really like him."

Patients and advocacy groups say it can be difficult to gain awareness for rare diseases, and television medical dramas can play an important role in teaching the public about them.

According to the National Organization for Rare Disorders (NORD), a rare disease is one that affects fewer than 200,000 Americans at any one time.

There are between 6,000 and 7,000 rare diseases that, together, affect from 25 to 30 million Americans.

VHL, the condition featured on "Grey's Anatomy," is a genetic cancer condition that causes tumors in areas of the body that are rich in blood vessels, such as the eye, kidney, pancreas and spinal cord.

About one in 32,000 people in the world have been diagnosed with the disease. Twenty percent of those cases are new mutations, while 80 percent are children of parents who also had VHL. Most VHL patients will have symptoms of the disease in their teens and 20s.

Rare Disease on TV

While Graff, of the VHL Family Alliance, has never pitched a television show, Clack, of "Grey's Anatomy," said that the idea is not totally out of the question.

"It's a case-by-case basis," said Clack. "In general, the storylines are based completely on the writers' research and stories that will benefit our characters. As part of that research, we are interested in real stories from real people.

"While we don't solicit pitches, we contact groups for further information on current stories," Clack added.

Beth Smith, a 32-year-old mother of three living with VHL, is a real-life VHL patient.

"I like when VHL is featured on TV shows and in the news," said Smith, who currently has three tumors on her brain, one on her pancreas and one on her kidney. "We need all the positive publicity we can get to raise awareness and money for the disease."

At the beginning of each season, Clack said that producers gather up interesting real-life medical cases and diseases. As the real-life doctor in the background of the television show, Clack said she has studied many conditions that doctors will read about but never see in their lifetimes.

"VHL is one of those syndromes," said Clack. "We thought it would be interesting to have a long-term arc with someone who was going through it."

Mary Dunkle, vice president of communications at NORD, said that rare disease portrayals on these television shows are exciting, partly because the exposure could lead to research funding and raise awareness in the medical community, but also because patients can feel isolated with a rare disease, and they want others to understand their condition.

"These shows can even help with the way children get handled through the schools," said Dunkle. "If school nurses and administrators have seen a program about a disorder and they happen to have a child with that disorder, they tend to be more understanding."

NORD occasionally receives phone calls from television producers who are in search of information for medical dramas such as "Grey's Anatomy," "House," "Boston Med" and Discovery's "Mystery Diagnosis," said Dunkle.

"It really seems like producers and show writers are really trying to do a good job in getting the facts straight on rare disease," said Dunkle. "In my experiences, it seems that they often think of themselves as educators rather than entertainers."