Kawasaki Disease: The Race for Accurate Diagnosis and Treatment in Children

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Kawasaki Disease, also known as lymph node syndrome, mucocutaneous node disease, infantile polyarteritis and Kawasaki syndrome, is a rare condition that affects children, mostly under the age of five. The disease affects the skin and mucous membranes, lymph nodes, blood vessel walls and the heart, among others. If diagnosed and treated early, most patients go on with their lives symptom free. In this special edition Patient Power program you’ll hear from a patient and two renowned experts as they discuss this unusual and difficult to diagnose condition.

Kate Davila speaks frankly about her experience with Kawasaki Disease, her symptoms of high fever and how she was referred to many hospitals before getting an accurate diagnosis. Kate’s heart was affected, but she was able to lead a normal life in high school as a cross-country runner and cheerleader. Hear about how Kate monitors her disease as an adult and her take on the importance of educating others about Kawasaki Disease.

Dr. Stanford Shulman, professor of pediatrics at Northwestern University's Feinberg School of Medicine and chief of the Infectious Disease Division at Children's Memorial Hospital in Chicago, talks about why Kawasaki Disease is often overlooked and what symptoms to look for. Dr. Shulman also touches on the history of Kawasaki Disease, its prevalence in Japan and the future of research for this condition.

Also hear from Dr. Michael Portman, Professor of Pediatrics at the University of Washington and Director of Pediatric Cardiovascular Research at Seattle Children's Hospital and Regional Medical Center. Dr. Portman explains the effects of Kawasaki Disease on the heart, the importance of early treatment with IVIg therapy and the purpose of the electrocardiogram. In this program you’ll learn more about this disease, why it’s important to raise awareness and the latest news on research and treatment.

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Transcript

Andrew Schorr:

Hello and thank you for joining us. I'm Andrew Schorr. We're broadcasting live with four guests in front of me from a studio in Seattle. We're broadcasting worldwide, and we're here to talk about a condition that just terrifies parents if it happens to you, and that's called Kawasaki disease. We are going to learn about it with 2 leading medical experts. We're going to learn about a foundation that helps support people with it, and we're going to hear how it's affected patients and parents.

So now, I want you to meet Kate Davila. So, Kate lives near Seattle now. She is 29 years old. She is married, sort of a newlywed, right? And Kate used to live in Wiscasset, Maine. That's where she was growing up on the beautiful Maine coast, and when she was, something sort of went wrong. She developed a high fever, right Kate?

Katryn Davila:

Yes.

Andrew Schorr:

And your mom and you were wondering what was going on. You went to your pediatrician, and what happened next?

Katryn Davila:

I ended up going with both of my parents back and forth over the course of a week and was treated for flu and everything else under the sun. Then at the end of the week, I ended up going in and was put into the emergency room because I was so dehydrated. As they started rehydrating me with the IV, I just got sicker and sicker and sicker and ended up being tested for meningitis and spinal tap and everything and was admitted and put in the end of a ward by myself under quarantine. No one knew what I had until about a day later.

Andrew Schorr:

And this is after how many days?

Katryn Davila:

That was probably day 10.

Andrew Schorr:

Okay, and finally somebody said, well it could be this condition, pretty rare, 3500 cases a year in the U.S., young children up through teenagers, Kawasaki disease.

Katryn Davila:

Yes.

Andrew Schorr:

And then you were sent to another, bigger hospital in Portland, Maine.

Katryn Davila:

Yes.

Andrew Schorr:

And then you got what are the leading treatments; immunoglobulin, IVIg, and aspirin, right?

Katryn Davila:

Yes.

Andrew Schorr:

Okay. Life goes on. You did have some cardiac effect, and yet you were able to be a cheerleader and do cross-country and run track.

Katryn Davila:

Yes.

Andrew Schorr:

So now let's flash forward four years. You're in college. What happens one night?

Katryn Davila:

I basically woke up and was having severe arm pain, just in my left arm, and headache. After maybe about an hour or so, I called my cardiologist at the time, and he said just go in to the local ER and get checked out. I went in, and they didn't know what to do with a 19-year-old coming in complaining of arm pain and headache and basically after a while started running some enzyme tests because of my history and said that I had had a heart attack because of the arm pain, but because I was presenting with not the normal heart attack symptoms, they were not quick to judge that.

Andrew Schorr:

Right. And you had a subsequent second event, right?

Katryn Davila:

Yes, about 4 months after that. It was on spring break from college and I started having pain again, but it was this time just in both arms. Never in my chest, never had shortness of breath, never had any of the normal symptoms.

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