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Common Misconceptions & Current Treatment

April 9, 2018

Common misconceptions of primary immunodeficiency diseases (PI) are that individuals with these rare, chronic disorders are “allergic to the world” and they “live in a bubble.” With early diagnosis and appropriate treatment, most living with a PI can lead healthy and productive lives—with no need to shield themselves from the world.

Take the 2017 film Everything, Everything as an example of misconceptions that exist. The movie is based on a book of the same name by Nicola Yoon, and is about a young woman with Severe Combined Immune Deficiency (SCID), a severe, rare type of PI. This movie could have been a valuable opportunity to educate a wide audience about SCID, but the Immune Deficiency Foundation (IDF), the national patient organization for people with PI, was surprised and saddened to find 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” 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. 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.

Thankfully, sometimes Hollywood can get the story on rare diseases right and accurately display what living with a chronic illness is like. The 2017 film The Big Sick, co-written by Emily V. Gordon, is a true story based on Emily’s real struggle with receiving a diagnosis. In the movie, Emily checks herself into the hospital with symptoms that appear to be a super flu, but was soon put into a medically induced coma because the doctors didn’t know what was wrong with her. Click here to learn more about Emily on the IDF blog.

After weeks of specialist after specialist, Emily was finally diagnosed with Adult-Onset Stills Disease. The movie was a thorough representation of what people living with rare diseases go through, as well as their families. In February of 2017, after the film’s release, Emily received a diagnosis of Common Variable Immune Deficiency (CVID), a type of PI. Emily is now living with two chronic and rare diseases.

Despite what some Hollywood movies may portray, IDF wants people to know more about PI and what people living with PI go through. These disorders are caused by hereditary or genetic defects, and although some disorders present at birth or in early childhood, the disorders can affect anyone, regardless of age or gender. Some affect a single part of the immune system; others may affect one or more components of the system. And while the diseases may differ, they all share one common feature: each results from a defect in one of the functions of the body’s normal immune system.

This is why spreading awareness of PI is so important. No, it’s not contagious. No, individuals living with PI don’t need to live their lives in a sterile environment. Yes, with proper medical care and treatment most individuals can live full and independent lives.

There are thousands of people, however, who are living with PI and not yet diagnosed, making promoting awareness so critical. The earlier they can be diagnosed and receive treatment, the better. 250,000 people are diagnosed with a PI in the U.S. while thousands go undiagnosed. Since PI manifests itself in ways much different than their misconceptions, it’s important to educate people about what it’s really like living with PI and what symptoms to look out for. For example, if someone suffers from chronic sinusitis, they may want to ask themselves: is it just an infection?

IDF says that you should be suspicious if you have an infection that is…

  • Severe – requires hospitalization or intravenous antibiotics
  • Persistent – won’t completely clear up or clears very slowly
  • Unusual – caused by an uncommon organism
  • Recurrent – keeps coming back, or if it
  • Runs in the family – others in your family have had a similar susceptibility to infection

Join IDF for National Primary Immunodeficiency Awareness Month, and help fight the common misconceptions of PI and promote early diagnosis: www.primaryimmune.org/awareness.

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