Is SCID Real? Maddy's 'Everything, Everything' Disease Is Complicated
An adaptation of Nicola Yoon's young adult novel Everything, Everything is coming to theaters soon, starring Amandla Stenberg and Nick Robinson as teens who fall in love, despite Stenberg's character Maddy having an immune deficiency disorder that requires her to stay in her house and away from the world at all times. The mysterious condition plays a huge role in the story, but is SCID, Maddy's Everything, Everything disease, real?
Maddy's SCID is, in fact, a very real and frightening disorder. The acronym SCID stands for severe combined immunodeficiency, and Johns Hopkins Medicine Health Library explains that it is an "immune deficiency that is present at birth" and that "children with SCID are missing important white blood cells," which puts them "in constant danger of infections from bacteria, viruses, and fungi." According to the National Human Genome Research Institute, about 40-100 babies are diagnosed with SCID in the United States each year, which makes it a rare disease that is not often tested for prenatally or at the newborn phase.
Despite SCID being so uncommon, it is a pretty well-known disorder, likely because of a highly publicized case of SCID in the 1970s. In that case, discussed here in the New York Times, David Vetter, a boy with SCID whose brother had already died of the disease, was required to live in a sterilized chamber in his home, earning his media coverage as "the boy in the bubble" or "the bubble boy." A 1976 TV movie called The Boy In The Plastic Bubble was inspired by the story. Ultimately, Vetter died at age 12, in 1984, after an unsuccessful bone marrow transplant which would have allowed him to live a more normal life.
So, Maddy's disease in Everything, Everything is very real, but just as The Boy In The Bubble was highly sensationalized and dramatized, it seems that, according to the Immune Deficiency Foundation, the new movie might not get many of the facts right. The foundation released a statement on EE (it's very informative but also includes spoilers, so take note), which highlights a number of the ways in which the disease is misrepresented. The statement notes that it was never standard practice to force SCID sufferers to live in sterilized environments, and that today, "most persons with SCID who have received treatment lead healthy and productive lives with no need to shield themselves from the world." If you're not worried about film spoilers or being bummed out by how much movies can distort real-life situations, the statement is fascinating and well worth a read, bringing up a lot of important points about SCID and the larger issue of misrepresenting real medical diagnoses in media.
There's no doubt that Everything, Everything is a compelling story, regardless of the truth behind it, but if it's got you interested in SCID and immune deficiency disorders, be sure to read up on the realities behind them.