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Living with an Immunodeficiency in Show Business

In a podcast from the Immune Deficiency Foundation, “The Big Sick” co-writer, Emily V. Gordon, shared her experiences navigating life with two rare conditions.

podcast microphone in a studio

Looking at Emily V. Gordon’s impressive resume – from co-writing an Academy Award-nominated film to writing for HBO and Netflix, you would never know that two rare medical conditions affect her daily life.

As dramatized in “The Big Sick,” which starred her husband and co-writer Kumail Nanjiani, Gordon has endured repeated infections due to common variable immunodeficiency (CVID), a primary immunodeficiency. She also lives with adult-onset Still’s disease, a rare inflammatory arthritis that causes fevers, rashes and joint pain.

Gordon appeared on the IDF Podcast from the Immune Deficiency Foundation (IDF),  an advocacy organization dedicated to improving the diagnosis, treatment and quality of life of people affected by primary immunodeficiencies. On the episode, Gordon discussed the long journey toward acceptance and how to avoid being defined by health conditions.

“All of this is unfair. It shouldn't have happened. Here we are, what can we do?” Gordon said. “You control very little in this life. And I think the sooner you can just kind of sit with that and then figure out what you can control… the better.”

“The Big Sick” helped people understand “oh, she's got a thing,” Gordon said. Her decision to become her own advocate made even more of an impact. 

The IDF podcast - interviews, stories, news and more for the rare and powerful

“And so, I try to remember, don't ever settle for ‘Well, this is what my life is. It's this very small thing and I have to keep it this small or else I'm going to make myself sick,’” Gordon said. “There's always ways that I think we can kind of push ourselves so that we don't stay in boxes forever.”

Listen to the fireside chat with Gordon and Tracy Shaw, Chair of the Board of Trustees of the Immune Deficiency Foundation.

Learn more about "The Big Sick" and other films that dramatize the patient experience.