My Kawasaki Disease Story
By Dr. Jane Newburger
I first became involved in caring for KD patients and their families in the early 80’s, before IVIG was an established therapy. At the time, I had recently completed my fellowship training in Pediatric Cardiology and completed a masters degree in biostatistics and epidemiology at the Harvard School of Public Health. Because of this training, my department chairman, Dr. Alexander Nadas, asked me in 1982 to assume responsibility for children with KD at Boston Children’s Hospital. I had no idea at the time that this disease would become a lifelong mission for me. The 80’s were an exciting time for Kawasaki disease care and research in Boston.
Simultaneous with my new responsibility as the cardiologist responsible for KD, my close friend, and colleague, Dr. Jane Burns, joined the Division of Infectious Diseases at Boston Children’s. We were both passionate about improving our understanding about the causes and treatments of KD and quickly realized that it was important to centralize care of children with this rare disease. We formed the “Kawasaki team,” with one or the other “Jane” on call at all times for any child who came into our Emergency Room with KD as a possible diagnosis. The early results with IVIG in Japan prompted the formation of the U.S. Multicenter KD Research Group and also the first international Kawasaki Disease Symposium in Hawaii in 1984. To test IVIG therapy in a US population, we were fortunate to obtain funding from the National Institutes of Health for a US multicenter trial of IVIG plus aspirin versus aspirin alone.
The study conclusively showing that IVIG was a highly effective therapy for most children with KD. This study was the first of many other trials and other clinical studies on the effects of different treatments on preventing coronary aneurysms and reducing inflammation in KD. Of our many research studies, I am particularly proud to have demonstrated the utility of z scores (dimensions adjusted for a child’s size) to diagnose coronary artery enlargement. I am also proud of the 2004 American Heart Association guidelines in which we created an algorithm to improve the rate of timely IVIG treatment of patients with suspected incomplete KD.
I am blessed to be working with members of an extraordinary KD Team in Boston. At the heart of the team is Annette Baker, the nurse practitioner and program coordinator who has worked with KD patients in this position for the past 28 years. Rheumatologists on the KD team are led by Dr. Mary Beth Son, Chief of Rheumatology at Boston Children’s. Many other rheumatology and cardiology faculty contribute their expertise in diagnosis, treatment, coronary imaging, exercise testing, and bypass surgery. I have great confidence in a bright future for KD research, including studies to better understand the causes of KD, the body’s response to the disease, and better methods for treatment of coronary aneurysms.
We hope this work will allow us to develop more effective and specific treatments for children with KD. Most of all, I am inspired by my KD patients and their families to provide the very best treatment and long-term care. Our KD program has provided care for more than 2,000 KD patients, and in particular, has especially been entrusted with those with coronary aneurysms from countries around the globe. Because KD doesn’t follow working hours, a member of our team is on call 24/7, fielding questions from families and their physicians. I derive the greatest joy from the work that I do in helping KD patients live healthy and fulfilling lives. As much as KD patients are my mission, my greatest dream is to eradicate the disease entirely, and meanwhile, have effective treatments to eliminate the development of coronary aneurysms.