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."
Whenever possible, "Grey's Anatomy" producers speak to the foremost expert on the rare disease that will be featured on the episode. They also touch base with an organization called Hollywood, Health and Society, which assists in connecting TV producers with medical experts.
"Or, if we've found a particular case, we try to speak to the actual doctors that performed the surgery or did the treatment we read about," said Clack.
Dr. Stephen Groft, director of the Office of Rare Disease Research (ORDR) at the National Institutes of Health, said that his office also has been contacted by various shows. The office acts as the facilitator, guiding television show producers to specific advocacy groups and researchers receiving NIH funding for a specific illness or condition.
"The level of interest in rare diseases seems to have increased," said Groft. "Whether it's the media bringing more attention to the television shows or there is more of a presence on the Web, there have been more and more rare diseases being talked about these days."
On MedPage Today's partner site, KevinMD.com, VHL Family Alliance's Graff recently expressed her concern about the misrepresentation of conditions in medical shows.
She wrote: "Mischaracterizations by the popular media of medical conditions, particularly rare ones, can be very demeaning to people afflicted with those conditions, and can affect how people look at them in the workplace or at school."
In an episode on the television show, "House," a VHL patient, murders people during a burst of adrenaline. Graff said it was an unfair depiction of the patient and the disease.
"The ultra-dramatic stories don't help," Graff wrote in the post. "Because most people don't experience the dramatic episodes depicted. "
If patients do have adrenaline symptoms from VHL, they tend to have increased heart rates and high blood pressure, often leading to symptoms of a panic attack, not violence.
"When there's a story of your disease on TV, you'd think you can go to work the next day and discuss it in a rational way, but if your co-workers think that they're in danger around you, that can be pretty embarrassing," said Graff.
And as someone living with VHL, Smith agreed.