In June 2018, 485 participants from 32 countries gathered in Yokohama, Japan for the 12th International Kawasaki Disease Symposium (IKDS). The 3 ½ day conference covered Kawasaki disease (KD) issues which included diagnosis and treatment, American Heart Association guidelines, KD epidemiology, genetics, pathology, pathogenesis, etiology, immunology, and socio-economic and psychosocial issues, among other topics. Since the first IKDS, held in Hawaii in 1984, several advancements in the treatment of KD have occurred, specifically when suppressing the onset of coronary artery aneurysms. These improvements are partly a result of the many exchanges between researchers at such international gatherings, said Dr. Tomisaku Kawasaki.
The theme of this symposium was “progress and harmony for Kawasaki disease” which highlighted the goals of clinicians, researchers, and epidemiologists at the event to understand the cause of KD, develop fundamental treatment strategies based on those causes, establish methods for preventing KD, and reduce the occurrence of KD. “I BELIEVE THAT INTENSIVE DISCUSSIONS, SHARING IDEAS, AND INFORMATIONAL EXCHANGES WILL DO MUCH TO RELIEVE THE GREAT NUMBER OF PROBLEMS THAT KAWASAKI DISEASE CAUSES,” Explained Dr.Kawasaki as he shared that he was overjoyed to have so many excellent researchers from all over the world at the 12th IKDS.
We had 8 representatives from our Foundation join KD parents and patients from the US and Japan . This is the second time we have been invited to give a presentation as part of the parent session. In 2015 we were invited by the US KD Foundation and this time, due to networking at the first one with the Japanese parents ,they invited us. During this parent session we gave a presentation on our recent achievements and challenges and along with a PowerPoint presentation we showed a video we made for this occasion. Representatives from the KD Foundation United States and the Japanese Parents Association also spoke about the diagnosis and treatment of KD. The common problem we all reported was that misdiagnosis or delayed diagnosis of KD continues to be an issue.
MEET AND GREET WITH DR. KAWASAKI
Following the parents session, we were very lucky to have a Meet and Greet opportunity with Dr. Kawasaki. This was an amazing experience and an opportunity to personally thank him for his dedication. The photo book we collated was very much appreciated by both Dr. Kawasaki and the Japanese Parents Association. Dr. Kawasaki was so fascinated by it he kept on wanting to look at it while everyone present was trying to capture that very special opportunity for a photo with him.
We were also lucky to be able to source through a local Federal politician an Australian flag and special pack of Australian books and posters. We added a few truly Aussie items to these including vegemite, little soft toy koalas and kangaroos plus our merchandise which were presented in a specially made Australian bag to Dr. Kawasaki and each member of the Japanese parent group. The following thank you was received from the Japanese parents in a later email-
“The book you gave us was showed at our big meeting. Everyone was moved very much”
During the symposium the US KD Foundation distributed tote bags filled with KD symptoms posters, a t-shirt and KD awareness bandanas to medical professionals from Argentina, Australia, Canada, China, Colombia, India, Italy, Japan, Malaysia, Mexico, Mongolia, Netherlands, South Korea, Taiwan, and the United States. The KD awareness materials were passed out as part of the KDF’s “Make the Pledge” campaign which encouraged medical professionals to raise KD awareness on the upcoming National Kawasaki Disease Awareness Day, January 26th by handing out the awareness items to individuals in the medical field who are unaware of KD.
The IKDS sessions concluded with a presentation on the highlights of the event presented by Dr. Jane Burns and Dr. Jane Newburger which included the following:
- In Japan, a dip in the number of KD cases in 2016 occurred but over 15,000 new cases per year with a steadily rising baseline were recorded.
- In the United States, the number of KD cases per year does not appear to be rising.
- In India, the increase in the number of KD cases per year is due to better recognition of KD.
- Researchers discussed the emerging idea that there may be more than one trigger for KD with a final common pathway.
- A 30-center survey in the United States showed tremendous practice variations in the treatment of KD.
- Similarly, international practices in the use of intravenous immunoglobulin, secondary practices, and anticoagulation vary tremendously by country, type of physician and economic circumstances.
- KD patients lost to follow up in the long-term management of KD is a huge problem in Japan and the United States.
While these symposiums are mainly planned for medical professionals , parents are free to attend any of the presentations, though a medical background can be helpful to understand a lot of what is being discussed. Headphones and interpreters are provided for presentations given in Japanese. There are various poster displays also throughout the symposium which give an insight into how many different studies researchers from many countries are conducting. These symposiums have proved invaluable in not only gaining more information on current KD research and breakthroughs but also helping strengthen and expand our contacts with other KD groups, parents and medical professionals.
The 13th IKDS which will be held in Autumn ( October )2021 in Tokyo, Japan.
Bec Wilby – Memoirs from the 12th International Kawasaki Disease Symposium, Yokohama Japan 2018
I am very grateful to have had the opportunity to attend the 12th International Kawasaki Disease Symposium ‘Progress and Harmony for Kawasaki Disease’, which was held in Yohohama, Japan, in June 2018.
This was my first time visiting Japan, and I absolutely loved the people, the culture, and the sights. Highlights were the Great Buddha in Kamakura, the Senso-ji Temple, the amazing views from Tokyo Tower and evening light show, and of course sharing the magic of Disneyland with my family, a place I had wanted to visit since I was a kid!
The Symposium itself was fantastic! It was moderated in Japanese and as I am far from fluent in Japanese, I was provided with a portable translating device for real time communication in English. Researchers and medical specialists delivered information about the latest findings of KD research and there was a display of over 100 posters summarising individual KD research projects which were all very interesting. KD Foundations from Australia, Japan, Hawaii & USA delivered presentations outlining their individual associations, their achievements, and their future goals. Key themes that stood out were collaboration and continued awareness raising to assist with early diagnosis and prevention of coronary damage.
It was great to meet other KD families from across the world and strengthen our connections. I enjoyed hearing about their experiences, challenges, fundraising, and awareness campaigns. My kids also enjoyed making new friends and sharing stories about their own countries. We were fortunate to meet Dr Tomisaku Kawasaki and his family who were all very humble and welcoming. It was a time to reflect on the KD journey that I had been through as a parent and acknowledge how Dr Kawasaki’s work has been instrumental in the diagnosis and treatment of KD as we know it today. It was a privilege to be able to personally say thank you to Dr Kawasaki and this is a moment that I know I won’t forget. Quinn, my KD kid, said “I liked meeting Dr Kawasaki because he was really kind to me. I made some new friends like Maya and Cam who had Kawasaki Disease too”. KD brought us all together and these connections of shared experiences are invaluable.
On the final evening of the Symposium, I attended the Gala Dinner, along with other KD Foundation representatives, researchers, medical specialists, and Dr Kawasaki was the guest of honour. It was a wonderful display of Japanese hospitality and entertainment. The evening was filled with traditional Japanese ceremonies and games, Young Investigator Award presentations, and further opportunity to network with others that had a shared interest of KD.
I appreciate the time I was able to spend with an inspiring community of KD families and advocates. It is reassuring to know that there are so many people from diverse countries that have an interest in KD and shaping our future through their continued research. Thank you.