RARE TV: How Accurate are Fictional Accounts of Rare and Genetic Conditions?

For members of the RARE Disease Community, the world of fictional television programs may seem like a care-free break from the daily stress of living with a difficult medical condition. However, sometimes even TV may not be a safe escape. With the growing popularity of medical dramas and human interest programs, it becomes more and more likely that rare conditions will be represented in fictional contexts.

In the era of House, Grey’s Anatomy, and TLC, conditions like gliosarcoma (Grey’s Anatomy and Private Practice), VHL (Grey’s Anatomy), Ewing’s Sarcoma (BONES), and porphyria (House) are all getting screen time. Many are now wondering how accurate these portrayals are, as well as what the implications of these fictional plots may be.

Medical dramas may certainly play an important role in increasing awareness of rare medical conditions and diseases. An increase in public awareness for a condition may escalate research or supportive funding. As seen most recently with the ALS Ice Bucket Challenge, it is clear that a little positive publicity can have huge effects for a disease community. In addition, it was a television program (Quincy, M.E.) that lead to passing of the Orphan Disease Act in 1983. They may also be a source of positive patient empowerment for affected individuals, who may find inspiration to pursue treatment or seek a wider support network. Rare on TV certainly enforces the point that even those suffering from extremely uncommon conditions are not alone.

However, inaccurate representations of rare conditions can also have heavy consequences. An inaccurate disease portrayal can be extremely demeaning to affected individuals, as well as raise unwanted personal attention. Also important, a television episode generally only follows a single individual or case study. If a fictional patient behaves in an unrealistic and dramatized way or suffers from a caricature of symptoms, it can be highly insulting to real patients and families.

What do you think? How do you feel about film and television portrayals of uncommon diseases? What are your favorite examples of well done, fair portrays? How about poor ones? Have you ever seen an episode about your own disease? Please comment with your stories and favorite episodes!

 Hannah Meddaugh

 Hannah is an undergraduate student majoring in genetics at the University of Wisconsin-Madison. Following graduation, she intends to pursue a career in genetic counseling.