To the Author of 'Everything, Everything,' From a Teen With a Primary Immunodeficiency

“Everything, Everything” is a best-selling novel turned movie telling the story of a teenage girl who has severe combined immune deficiency (SCID). It shows her as “allergic to the world” and unable to leave her house, with the only people she has ever met was her mom and nurse. She then falls in love with the neighbor boy, and leaves the house for love. In the end of the movie, her mom is accused of falsely creating the illness, a common but false accusation in the primary immunodeficiency (PIDD) community.

Dear Nicola Yoon, author of “Everything, Everything,”

My name is Megan and I am a seemingly healthy 18-year-old. I attend a regular high school, participate in many sports such as cross-country and nordic skiing and am involved in many clubs throughout my school. I was even the first person from my school to qualify three times for a  national event through the Future Business Leaders of America. However, I live with a primary immunodeficiency, as you are apparently knowledgeable of.

In the last seven years, I have worked tirelessly to create awareness and dispel myths about primary immunodeficiencies. These diseases are not as rare as it is made to seem, but there has been very little awareness for this disease. When David Vetter was diagnosed with SCID in 1971, there was very little medical knowledge about primary immunodeficiency. Since then, there has been monumental change regarding the research and treatments that individuals with PIDD and SCID can receive. Now, many states screen newborns for SCID. If there is evidence, they undergo life-threatening transplants to be able to live normal lives. Unlike what your story depicts, an individual never has to stay within their house for 18 years due to SCID.

Living with a primary immunodeficiency I have missed over 200 days of school, had over 250 sinus infections, and recently an admired friend and advocate passed due to complications with a primary immunodeficiency. I have dealt with intense feelings of isolation, depression and anxiety. To see my disease romanticized and used incorrectly for entertainment disgusts me.

We have very little awareness of our disease, and the awareness that was created by your book only creates more myths about our abilities and the progress of our disease. As you have exploited in your movie and book, the immune system is invisible. There is no way to see from the outside that I do not have a functioning immune system; in fact, I look very healthy. Because of this, my parents have been accused of “babying me” and making up my illness. To have this re-enforced by a national film is disheartening.

If you are interested in learning accurate information about primary immunodeficiencies, please contact myself, the Immune Deficiency Foundation or the Jeffery Modell Foundation. I am extremely disappointed with your depiction and lack of knowledge of the disease you are trying to depict.

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Photo courtesy of Everything, Everything Facebook page