About
Kawasaki Disease:
Kawasaki disease
(KD) is named after the Japanese pediatrician Tomisaku Kawasaki
who in 1967 described 50 cases of infants with persistent fever,
accompanied by rash, lymphadenopathy, edema, conjunctival injection,
redness and cracking of the lips, "strawberry tongue,"
and convalescent desquamation. Today KD is understood as a rash/fever
illness of early childhood in which coronary artery aneurysms
(CAA), sometimes fatal, may develop in up to 25 percent of untreated
children.
The incidence is
highest in Japan with an annual rate of 130-140/100,000 children
under 5 years of age. In comparison, incidence for the continental
U.S. varies between 9 and 20/100,000 children under 5 years
of age and for Japanese Americans living in Hawaii between 120
and130/100,000 in children under 5 years of age. Because its
etiologic agent(s) and patho-physiological mechanisms remain
unknown, and because there is no diagnostic laboratory test
for KD, diagnosis relies on the observation and recognition
of clinical signs that comprise the KD case definition. With
the establishment of intravenous immunoglobulin (IVIG) as an
effective therapy, prompt diagnosis has become essential for
timely therapy to ensure a good cardiac outcome.
Although researchers
have attempted to uncover the etiology of KD since the 1960s,
we appear to be no closer to an answer. Among those who assume
there is an infectious agent, disagreement continues over whether
the agent is bacterial or viral and whether or not it acts as
a super-antigen. Immune response remains a crucial arena of
investigation; yet no robust hypothesis has convincingly linked
the sign complex and immune cascade with the development of
CAA.
For more information
about Kawasaki Disease, please visit the website of the Kawasaki
Disease Foundation.
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The
Research Project:
In an effort to widen
research questions related to the etiology of KD, the Kawasaki
Disease Research Program at the University of California, San
Diego (UCSD) School of Medicine initiated a medical historical
investigation of KD in the spring of 1998. We hoped that such
an investigation might uncover useful clues in the search for
an etiology of Kawasaki disease.
The team (see below)
collected a variety of data including historical records of
clinical cases and autopsy reports. Because KD was only recently
recognized, first-hand accounts are available from those involved
in its "discovery." We conducted a series of KD-focused
interviews with pediatricians, pathologists, and medical researchers
from Japan, North America, and Europe. Topics covered in these
open-ended interviews included a recollection of the person's
earliest clinical observations, their histories of research
into the characteristics and the etiology of the syndrome, and
their professional conversations about it. To gain a context
for the interview data, we also observed practicing physicians,
including members of our team, as they considered and eliminated
KD and possible alternative diagnoses. In addition, the observational
data were triangulated with our historical understanding derived
from the review of existing written sources.
In 2003, the team,
along with the Kawasaki Disease Foundation, a national parents
group led by Greg Chin in Massachusetts, applied for and was
awarded a three-year National Library of Medicine Grant (National
Institutes of Health) to develop a website and produce a film
on the history of Kawasaki Disease. This website will include
transcriptions and films of these interviews; PowerPoint presentations
of our preliminary findings, as well as our publications to
date.
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| Howard
I. Kushner |
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Dr.
Kushner is the Nat C. Robertson Distinguished
Professor of Science & Society at Emory University
and Associate Director of the Center for Health, Culture
& Society. Kushner has written extensively on medical
and social history, including American Suicide
(1991) and A Cursing Brain? The Histories of Tourette
Syndrome (1999). His current research focuses on risk
and protective factors in addictive behaviors.
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| Christena
Turner |
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Dr. Turner is an Anthropologist and Associate Professor
of Sociology and former Director of the Program in Japanese
Studies at the University of California, San Diego. Turner
is author of the book Japanese Workers in Protest:An
Ethnography of Culture and Experience(1994) and articles
exploring culture and inequality in Japan and China. Her
current research focuses on contemporary practices of
cultural production in Japanese organizations and on transnational
processes of creating consensus in Kawasaki Disease.
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| Jane
C. Burns |
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Dr. Burns is Chief of Allergy, Immunology, and Rheumatology
in the Dept. of Pediatrics at the University of California,
San Diego School of Medicine. Burns has a career-long
interest in Kawasaki disease and has authored numerous
clinical and basic science articles on the disease. Her
current research focuses on the genetic influences underlying
susceptibility to Kawasaki disease and coronary artery
complications.
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| John
F. Bastian |
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Dr. Bastian is Director of the Allergy, Asthma, and Immunology
Clinics at Children's Hospital, San Diego and Clinical
Professor of Pediatrics at the University of California,
San Diego. He has treated children with Kawasaki Syndrome
for over 20 years. His other research interests include
childhood asthma, primary immunodeficiency disorders,
and the applied history of medicine.
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| Rupert
Macnee |
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Mr. Macnee is a Marketing and Media Consultant. He has
produced, written, edited and directed programming for
PBS, A&E’s Ancient Mysteries and An Evening at
the Improv, Discovery Channels Movie Magic and World of
Wonder, and the CableACE winner Full Frontal Comedy for
Showtime. He has also created a wide range of Educational
and Promotional communication for corporate and educational
institutions, particularly in the health field. Most recently,
as a Broadcast Executive with KCTS Television, Seattle
he was responsible for several Public Television programs
including The Videogame Revolution, Exploring Space: The
Quest for Life in the Universe, The Inside Passage and
a series of interstitials with the Talaris Research Institute
for PBS about early childhood development and parenting
skills. His awards include: International Tape Association
Platinum Award; US Film & Video Festival Certificate
For Creative Excellence; John Muir Medical Film Festival,
Gold Medal, Patient Education; American Medical Writers
Association Film & Video Festival, First Prize, Patient
Education; CINE Golden Eagle; International Film &
TV Festival of New York, Gold Medal; Columbus International
Film & Video Festival, Bronze Plaque; British Medical
Association Film and Video Competition Certificate of
Educational Merit; San Diego Health Communicators Award;
CableACE, Best Stand-Up Comedy Show.
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