Still’s disease nearly killed the wife of comedian Kumail Nanjani. He spotlighted the condition, as well as the couple’s love story, on the silver screen.
Most romantic comedies include silly pickup lines, flirtatious encounters, and a happily ever after.
Few include a medically induced coma and a rare disease diagnosis.
But those are the unlikely co-stars of one of this summer’s most heartfelt films, “The Big Sick.”
Kumail Nanjiani, an actor and comedian who is best known for his role as Dinesh in HBO’s “Silicon Valley,” co-wrote the movie with his wife, Emily V. Gordon.
Gordon, once a licensed therapist, is now a comedy writer and podcast host.
“The Big Sick” is the story of Nanjiani and Gordon’s brief but intense courtship, including the moment Nanjiani must sign the paperwork to put his then-girlfriend into a medically induced coma.
“I had been sick for a little while and people kept telling me I had the flu, I had pneumonia, I was having panic attacks,” Gordon said in an interview with NPR. “None of that seemed right to me … Every time I went in, they would diagnose me with something different, and all I knew was that I felt quite awful and I couldn’t seem to catch my breath.”
In the movie, this plays out as a seriously ill Gordon goes to the hospital for treatment, and quickly finds out she was in a more troublesome situation than she knew.
The coma, doctors explained, would help her breathe and stabilize vitals while they tried to figure out what was causing her to be so sick.
“I went to the doctor and they decided to admit me to the hospital because my breathing was so unstable that they wanted to kind of check me out in a hospital,” Gordon told NPR. “And by the time I got there, my breathing was so unstable, as was my heart rate, that the only thing they could do to kind of keep me safe and keep my vitals stabilized was to put me on a respirator. And you should not be on a respirator while you are conscious, so that is why they put me in a medically induced coma.”
When Nanjiani arrived at the hospital, doctors told him Gordon needed to be put into a coma quickly.
For Nanjiani, who had been dating Gordon for just eight months at that point, the memory of that moment sticks with him.
“When I got to the hospital, Emily was in the ER and I went in and was talking to her and the nurse came in. And the nurse, first thing she said to [Emily was], ‘Oh, you’re a very sick girl.’ And I was like, ‘What? What does that mean? She doesn’t really look that sick.’ That was sort of the beginning of this journey,” Nanjiani told NPR.
Eight days later, the doctors finally gave a diagnosis: adult-onset Still’s disease.
If you’ve never heard of it, you’re not alone.
Adult-onset Still’s disease (ASOD) is a rare form of arthritis.
Only 1.5 people per 100,000-1,000,000 have it.
It’s a disease most often diagnosed in children, but adults can develop it, too. The common age of diagnosis is between 18 and 40.
“Still’s disease is the systemic form of juvenile idiopathic arthritis,” Dr. Bernard Rubin, DO, MPH, division head of rheumatology at Henry Ford Medical Group in Michigan, told Healthline. “Still’s disease is usually a pediatric disease, but it can occur in adults as in the movie, and then it is called adult-onset Still’s disease. In either case this is a rare illness and much less common in adults than even children.”
The most common initial symptoms are a rash on the upper body, arms, legs, and thighs, as well as a high fever that spikes one or two times per day. There can also be joint pain.
ASOD is a lot like lupus in many ways. Lupus is an inflammatory disease that causes the body to attack its own muscles and tissue.
Still’s disease may be confused for lupus before a real diagnosis is made.
The high fever is what can help doctors separate true cases of Still’s disease from other similar diseases, said Dr. John J. Cush, the director of clinical rheumatology for the Baylor Research Institute, and professor of medicine and rheumatology at the Baylor University Medical Center in Texas.
“The hallmark feature of Still’s disease is a spiking fever every day. The fever will be between 102 degrees and 104 degrees,” Cush told Healthline. “It scares the hell out of people.”
A diagnosis is hard because there are no diagnostic tests for Still’s disease, Cush said.
There’s also no known cause or cure.
Few doctors will have experience with this disease, which can slow diagnosis and treatment.
In fact, Cush adds, “most major medical centers and hospitals will see one case per year maybe.”
That’s why many people with the mysterious symptoms will eventually find their way to a rheumatologist, a doctor who specializes in the treatment of diseases that affect the bones, joints, and ligaments, as well as autoimmune conditions.
A person’s symptoms, plus a medical history, can help doctors reach the final diagnosis.
Most people won’t develop serious compilations from the disease.
“This is very uncommon,” Rubin said of Gordon’s story in “The Big Sick,” “both the severity of the lung involvement and the need for a medically induced coma.”
Still’s disease is treated with a variety of medications.
Steroids can help control inflammation, as can immunosuppressant medications.
Some people with the disease will take drugs daily as maintenance. Others will take medicine only as symptoms and episodes of ASOD occur.
Some people will experience periods of disease activity followed by periods of remission. Others may deal with the disease on a chronic or ongoing basis.
“About 50 percent of patients have symptoms for a period of time — maybe months — and then it gets better and goes away, usually after treatment with drugs that dampen the inflammation,” Rubin said. “There is certainly a portion of affected people who have chronic symptoms that may require long term treatment, but many are able to continue normal lives, even if they are on long-term treatment.”
ASOD, like many inflammation diseases, also requires a person living with the condition to be more in tune with their body and provide better care for it.
“I just have to practice self-care in the ways we all should be doing — get enough sleep, eat healthy and regularly, exercise, and keep my stress and drinking down,” Gordon told the Hollywood Reporter. “But I have to be a little more diligent about it because if I slip on any of those, my immune system can act up.”
While she wouldn’t wish for anyone to go through the same experience she did, Gordon said the coma and eventual diagnosis helped her learn to respect her body — and its importance to her.
And for that, she’s thankful for this experience.
“I definitely had a lot of body issues growing up. I was always a very over-tall kind of kid. To me, for a long time, my body had been a thing that did nothing for me. If anything, it kind of hindered me, and it was a problem. My body, I considered to be a problem. I had a lot of self-hatred for it. I didn’t treat it with respect, that’s for sure,” she told NPR. “And so to me it was a little ironic that I kind of got my wish, which was that I was quite separated from my body when I came out. It was very numb. It had had this very traumatic thing happen to it, and I wasn’t sure how to make peace with it. It really rocked me back to this place of how important it is to care for this body that is carrying my brain and my heart around. That’s a lesson that I wish I could have learned any other way, but it’s a lesson that I’m happy that I did get to learn this way. It’s really changed a lot. I have a lot more respect for my body, not as a thing that looks sexy or cool or skinny or whatever, but as a thing that kind of carries me around and as a thing I need to treat with respect because it’s not permanent.”