Rashes, lethargy, and the terror of the unknown: What it's like to survive Kawasaki disease, the rare childhood illness that scientists are scrambling to understand in the coronavirus crisis

• Eric Kinnell, now aged 42, nearly died from a bout of exceptionally rare Kawasaki disease as a five-year-old boy.
• The disease is receiving renewed attention because it has very similar characteristics to a new syndrome surging in children during the coronavirus pandemic.
• Kinnell had a temperature of 105 F, a rash all over his body, a swelling in his neck the size of a golf ball, and was so lethargic he couldn't walk when he reached hospital.
• He told Business Insider that the worst part for his parents was the "terror" of the unknown, leading them to clutch at a now-discredited theory that it was caused by carpet shampoo, blaming themselves.
• Scientists are still working to establish the connection between the new Kawasaki-like disease and the coronavirus.

Eric Kinnell was five years old when his family's Catholic priest came to perform his last rites.

The little boy had first come to hospital after suffering for about a week with what seemed like heavy flu. He was so lethargic he couldn't walk, and had a temperature of 105 degrees.

His other symptoms were more unusual. A rash covered most of his body, the skin on his hands was peeling, and a lymph gland in his neck swelled to the size of a golf ball. He was choked with phlegm. Inside his small frame, the arteries serving his heart were inflamed and bulging.

He was diagnosed with Kawasaki disease, a rare and serious children's condition that inflames the larger blood vessels, and which is seeing renewed attention this year since doctors around the world — mostly in cities hard-hit by the coronavirus pandemic — started seeing similar symptoms in children.

Thankfully, the priest wasn't needed. Now aged 42, Kinnell is a marketing director for a company in Bedford, Ohio, not far from where he grew up.

But Kinnell understands the panic reported among parents whose children are being diagnosed with a new, similar, and equally mysterious syndrome — not least because doctors are starting to connect it to the novel coronavirus, which did not seem to be a real concern for most children.

What is Kawasaki disease?

Kawasaki disease is the leading cause of acquired heart disease in children in developed countries, according to the American Heart Association (AHA), although it is much more prevalent in East Asia.

Kinnell was one of the 9 to 20 Kawasaki disease cases to occur per 100,000 children in the US every year, according to the Centers for Disease Control and Prevention (CDC).

If diagnosed promptly, 99% of children in the US survive it, according to the Kawasaki Disease Foundation. But if not caught early, its serious symptoms can last weeks. It is so rare, that many doctors — including Kinnell's — don't diagnose it immediately. And in a quarter of children, this can lead to damage to the heart.

Kinnell experienced the classic symptoms of Kawasaki disease, which can also include bloodshot eyes and irritation and swelling of the mouth, lips, and throat, according to the AHA.

Kawasaki disease is not contagious, and is thought to be caused by a genetic predisposition that is triggered by an earlier viral infection, according to the Kawasaki Disease Foundation. Experts say it's unlikely that one gene is linked to the disease; rather that it is a collection of genes that, individually, slightly increase a child's risk.

How does it relate to the coronavirus?

The disease has come to much greater public attention in 2020 because it is remarkably similar to a condition that has surged among children since the outbreak of the coronavirus, or SARS-CoV-2. The World Health Organization put out an alert about it on April 29.

Children have been arriving at hospitals with a Kawasaki-like syndrome accompanied by toxic shock, particularly in places hard-hit by the coronavirus, such as New York (more than 100 cases) and London (between 75 and 100 cases).

In Bergamo, which saw some of the highest rates of coronavirus infection in Italy, the rate of children experiencing Kawasaki-like symptoms rose 30 times this year, according to The Lancet.

In mid-May, a study in Bergamo found a link that doctors and health officials have feared: 8 out of 10 of the children being treated for the mysterious syndrome also tested positive for COVID-19.

Doctors disagree as to whether it is classic Kawasaki or something new, Science reported. And it does not yet have an agreed name, with The Lancet referring to it as PIMS-TS (Pediatric Inflammatory Multisystem Syndrome Temporarily Associated with SARS-CoV-2) and the CDC calling it MIS-C (Multisystem Inflammatory Syndrome in Children).

Kinnell spent around 30 days in hospital in a "twilight" state

Growing up in Richfield, Ohio, he had been an active, energetic kid. But with the onset of Kawasaki disease, he suddenly lost his appetite and became lethargic.

The pediatrician prescribed flu treatments and rest, but after around seven days Kinnell was taken to the Cleveland University Hospital, a 30-minute drive away.

He was to spend around 30 days there, while his family agonized. His memory of the time is poor — he was so young and profoundly ill. Drifting in and out of sleep and lethargic wakefulness, he entered what he described as a kind of "twilight."

At first, the illness was a mystery, but after the diagnosis, he remembers becoming a mini-celebrity to the medics.

"I kind of was on display during the time, because it was rare," he told Business Insider. Medics and students would be toured into his room to observe his rash. "Once they realized what they had diagnosed me with, I was the highlight of the hospital."

He recalled how the adults around him tried to hide how serious the situation was. While he was never quite conscious of the fact that he was close to death, he perceived more than the adults realized.

"As much as everybody was working to make me comfortable, children pick up on things more than you would expect," he said. "You could tell by the demeanor of staff, my parents, and my family, the terror and the fear of what was going on."

With no solid research, his mother clutched at rumors that rug shampoo caused the syndrome — and blamed herself

It was February 1983, and Kawasaki disease was only first described in 1967 by the pediatrician Tomisaku Kawasaki in Japan, where it is much more common than in the rest of the world. At the time Kinnell was in hospital, so little was known about it that a prevalent theory proposed a connection to carpet shampoo.

He remembered how his mom fretted about a new carpet their neighbors had got around the time of his infection. "For a couple of years after she was like: 'I don't know, it was just because you went over to their house. I shouldn't have let you go.'"

(There have been a number of studies published, some of which found a statistically significant correlation between rug shampoo and Kawasaki, but subsequent research has dismissed the theory, according to the Kawasaki Disease Foundation.)

Even as a child he could see that his parents were terrified

To Kinnell, his mom's vague carpet worries is a comical memory. But during his time in hospital, the fact that it was so poorly understood drove a particular kind of fear in his parents, he said. "I think the terror relied on the unknown, and it still does today, unfortunately."

After leaving the hospital, Kinnell spent several more days unable to walk, and then slowly regained his strength. But because of the intense stress the illness had placed on his heart, he went for echocardiograms and ultrasounds for years after, as it can cause lasting heart damage.

He remembers playing outdoors a few years later when his mom called for him "all excited and crying and happy."

The doctor had finally given him a clean bill of health. "We had a big party for all the kids in the neighborhood," he said. "And I'm like, 'why are we having a party? I feel fine.'"

Kinnell is keen to help research efforts

37 years after surviving Kawasaki disease himself, Kinnell is keen to know if there is anything survivors can do to contribute to its clinical knowledge.

Nonetheless, Kinnell suspects the disease had a lasting impact on his health, and would like to see more research on the long-term effects.

"I have just a lifetime of feeling like I have maybe a lower immune system than my peers," he said, acknowledging this is just a hunch. "Throughout my whole life I'm more apt to catch a cold or a flu or a virus.

"The length of my typical illness seems to last longer than my peers ... So I often wonder if survivors were all studied, we'd have some similarities in that."

With so many unknowns around how the disease connects to the coronavirus, Kinnell has been extra careful during the pandemic. He has worked from home for the last five weeks, and is reluctant to return to the office.

"I have a worry now that I see this uptick," he said. "You know, maybe I'm more susceptible to [the coronavirus] or maybe I'm immune to it, or maybe it's irrelevant? I don't know."

He added: "I would think as the story is getting out about Kawasaki, I would think others would have some of the same fears that I do as well."