Immune Deficiency Foundation Statement on "Everything, Everything"

TOWSON, Md., May 10, 2017 /PRNewswire-USNewswire/ -- Later this month, MGM Studios and Warner Bros. Pictures will release Everything, Everything, a movie based on a book of the same name by Nicola Yoon about a young woman with Severe Combined Immune Deficiency (SCID). This movie could have been a valuable opportunity to educate a wide audience about SCID, which is a rare genetically-determined condition, however, the Immune Deficiency Foundation (IDF) is surprised and saddened that director Stella Meghie's version continues Hollywood's trend of erroneously misrepresenting this condition through worn stereotypes and misinformation.

The portrayal of SCID in Everything, Everything makes use of the same tired tropes that have been circulating Hollywood since The Boy in the Plastic Bubble was released in 1976, while adding new incorrect details about the disease. The movie's main character, Maddie, has lived her entire life inside her house, her own version of the plastic bubble, because as she describes it she is "allergic to the world." The reality is that people with SCID are not forced to live their lives in a sterile environment, which is an antiquated notion that has not been the case for many years. In fact, it was never a standard treatment, having only been used in a handful of cases. Most persons with SCID who have received treatment lead healthy and productive lives with no need to shield themselves from the world.

SCID is a fatal primary immunodeficiency syndrome, caused by several different genetic defects, in which there is an absence of a vital combination of immune system functions, leading to extreme susceptibility to infections.

This condition is the most serious of the known primary immunodeficiencies, which are a group of over 300 different disorders. Fortunately, there are effective treatments, such as bone marrow transplantation, that can cure the condition if it is diagnosed early in infancy.

However, without definitive treatment, SCID is usually fatal in the first or second year of life.  

The portrayal of SCID as causing allergies is likewise inaccurate, as allergies are entirely different then infections, which is what SCID actually creates vulnerabilities to. In fact, allergies are unusual in infants with SCID because they are unable to make allergic antibodies.

Perhaps most troubling is that the twisted ending of the movie informs us that Maddie never had SCID in the first place and was the victim of her mother's Munchausen syndrome by proxy. For anybody that has ever sought a SCID diagnosis this will be particularly upsetting, as being accused of hypochondriac behavior is a common rebuff, and the film's reinforcement of this response is worrisome and dangerous.

IDF understands that the concept of being forced to separate yourself from the world is an enticing tool for storytellers, but IDF would hope that entertainment is not an acceptable reason to do harm to an already vulnerable group by spreading false information about their condition.

There is a wealth of easily accessible information about SCID, and in the future, we would ask that writers and filmmakers take the time to research the conditions they intend to portray instead of exploiting them through detrimental representations.

If you would like to see accurate information about SCID, please visit IDF's website at www.primaryimmune.org/SCID, or email us at [email protected] to request more information.  

SOURCE Immune Deficiency Foundation

Related Links

http://www.primaryimmune.org