This Blockbuster Hit Brings the Rare Disease Community into the Spotlight

In 1998, The Mighty first brought the rare disease community into the spotlight, followed by Extraordinary Measures in 2010. Now, seven years later, The Big Sick is doing it again in the most heartwarming and hilarious of ways.

Big screen movies like these have the potential to do wonders for advocacy and support, especially when they are as well done as The Big Sick.

This movie follows the love story of Kumail Nanjiani and Emily Gordon with an impeccable eye for comedy.

But, The Big Sick is not your typical rom-com.

Source: Giphy

Maybe this is because it’s based on a true story, or maybe because Kumail faces an arranged marriage by traditional Muslim parents, or maybe because the movie can make you laugh and cry at the same time. Regardless, I have seen The Big Sick twice now, and the second time was just as good, if not better than, the first.

Actually, I think I know why The Big Sick is so unconventionally wonderful.
It’s because after eight months into Kumail and Emily’s relationship, the couple breaks up due to unreconcilable cultural difference, Kumail sleeps with another woman, and Emily gets put into a medically-induced coma.

At the time, doctors think that Emily has a severe and resistant infection in her lungs, which they try to combat with numerous different types of antibiotics while she is stabilized in this medically-induced coma. All of these are to no avail, so they try surgically removing the infection. However, even after this surgery, the infection has spread to her kidneys and, catastrophically, her heart.

When her prognosis was at its most dismal, and Kumail and Emily’s parents were preparing themselves for her to die, doctors made a breakthrough.
They realized that Emily was suffering from Adult-onset Still’s Disease (AOSD), which is an extremely rare systemic auto inflammatory arthritis that affects fewer than 1 in every 100,000 people.
AOSD can present itself in a similar manner to other inflammatory and autoimmune disorders, and the symptoms of which may be so mild that the patient doesn’t think anything of them.
In Emily’s case, she felt more tired and weak than normal in the weeks prior to when her severe infection flared up. Random parts of her body, like her foot, were subject to surges of pain, which she would just attribute to a hip hop class that she took.

Doctors did not know any of this at the time, so all of the other inflammatory and autoimmune possibilities had to have been ruled out before a proper diagnosis can be made. Time is of the essence however, as AOSD ultimately can result in fluid accumulation in the lungs, heart, or kidneys, in turn causing a series of life-threatening complications, such as macrophage activation syndrome, in which the organs shut down as blood pressure flanks, as what happened in Emily’s case. To learn more about adult-onset Still’s disease, click here.

Once Emily’s team was able to pinpoint her diagnosis, they administered nonsteroidal anti-inflammatory drugs (NSAIDs), and thankfully, Emily stabilized within hours as was able to wake up from the coma.
So what about Kumail and Emily’s love story?
Kumail was with Emily the whole time that she was in the hospital, all the while realizing that he was madly in love with her.

I won’t spoil the end of the movie for you, so you’ll just have to see it yourself.

Source: Giphy
To read more about Emily’s case of AOSD, click here.
To learn more about The Big Sick on the Rare Disease Report, including reviews from movie critics, click here.

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