You’re familiar with the formula of the rom-com: Boy meets girl, girl falls in love boy, boy faces obstacle, girl almost loses boy – but eventually big kiss and happily ever after.
One of this year’s biggest hits was just about that – but with a twist we haven’t really seen in Hollywood flicks:
Boy meets girl, girl falls in love with boy and then girl falls…into coma, later being diagnosed with rare disorder.
2017’s The Big Sick, starring Kumail Nanjiani, centered on the real life story of Nanjiani and his wife Emily, when they first met. Mere weeks into them dating, Emily was put into a medically-induced coma. This lead to her diagnosis of Adult-onset Still’s disease (AOSD).
It’s not often we see a rare disease get so prominently displayed on the big screen!
AOSD is a rare condition that is characterized by episodes of high fevers, joint pain, and a salmon-colored rash that comes in periods of flare-ups and disperses in periods of remission. The disease can appear and disappear suddenly, arrive in only one episode, or have more frequent flare-ups in a span of several months. Hence, Emily’s character gets her sudden flare-up that has her put in a coma. To read more about this rare condition, click here.
“There’s actually no rhyme or reason why some people get AOSD,” says Apostolos Kontzias, MD, director of the Adult Autoinflammatory Diseases Clinic in the Department of Rheumatology at the Cleveland Clinic.
But younger women and people who suffered AOSD’s pediatric counterpart—systemic-onset juvenile idiopathic arthritis—are more likely to be affected.
“Typically, patients have daily fevers which aren’t due to infection or cancer,” explains Dr. Kontzias. Other symptoms include joint pain and chest pain, swelling, rashes, liver and spleen enlargement, and “very high inflammatory markers.”
While the movie centers more on Nanjiani’s perspective – principally on having to spend time with Emily’s parents for the first time while comforting them during her coma – the movie does a great job at showing the emotional journey of dealing with someone with a rare disease diagnosis; especially one that came all of a sudden.
The real Emily wrote in a 2015 article in Lenny Letter that she initially ignored what she thought was a persistent cold. But before long, she started to feel tired and weak: “I had to take breaks walking to the train,” she wrote.
How cathartic must it be to see a portrayal of the struggle of suffering symptoms and wading through a diagnosis?
I won’t give away the plot – or ending – but it’s a worth a watch!
Check out the trailer here!
What are your thoughts on portrayals of rare disease in pop culture? Share your stories, thoughts, and hopes, with the Patient Worthy community!