Since the historic 1st International Kawasaki Disease Symposium in 1984, the international symposium has been held every three years in Japan, the United States and Taiwan, drawing attendees from all continents. This year it was held in Hawaii, so being reasonably close to Australia, 8 parents decided to make the journey. Our medical advisor, Dr. Burgner and Dr. Chen who is working with him with his research, also attended.
This 3½ day conference included lectures, discussions and oral/poster presentations focusing on the latest advances in Kawasaki Disease.
Kawasaki Disease is well-documented as the major cause of acquired childhood heart disease in developed countries. About 400 clinicians and scientists from around the globe came together to share their common interest and new knowledge of Kawasaki Disease. Eighty-five parents had also registered for the Parent Symposium but unfortunately not all could make it due to the heavy snow in parts of America.
As Adrienne Kovacs, who presented the Alex McCormack memorial lecture at the Parent’s Association session said “We were fortunate to be able to attend this symposium. It is an incredible opportunity for health care providers and scientists to work together to improve the medical outcomes of children, teenagers and adults affected by Kawasaki Disease”. It was amazing to see the collaboration and cooperation between all the different countries.
Dr. Kawasaki and his wife were present for the whole symposium and it was such a great honour to meet this amazing man. He had to be the most photographed person at the symposium. He turned 90 while in Hawaii so a special celebration was held at the final dinner where he was presented with a cake. As Dr. Burns closed the video summary of the conference –
“Our fearless leader”
(Opening the Symposium)
(Start of Parents Session)
As well as having the opportunity to meet with researchers from around the world this event provided a wonderful opportunity to network with other parents. Parent Support groups from America, Hawaii, Japan, Canada and Australia were represented and each group gave a small presentation about the work of their group. We work very closely with the US Foundation and it was good to meet representatives from there.
(Merril Chin and Catherine Frank at information table)
(Catherine Frank and Greg Chin (left) from the US Foundation with Australian parents)
(Dr Kawasaki being presented with a gift bag from the US KD Foundation)
(Some Japanese and Australian parents at dinner)
This engagement between doctors and families and parents works both ways. In the Science News summary video of this event from the American Heart Association Dr. Newburger said most KD researchers are driven by their interaction with their patients and families so it seems logical to have them present. We stimulate doctors to do their work on this disease. We are their inspiration.
On a personal level it was wonderful to meet a Canadian mother I supported over 6 years ago. Her son Michael is now doing 1st year nursing and has been working with the Sick Kids team. His personal experience with KD has led him to help with research into this disease. He is working with his cardiologist Dr. McCrindle.
Following the symposium the American Heart Association published Michael’s story on their blog. Click here to read this inspiring story.
Vincenso Tito a young boy who had KD at 5 months, over 10 years ago, was also present selling copies of his book ‘Living With The Effects of Kawasaki Disease’. He decided to share his story to help other children to realise they are not alone and to help raise funds for KD research.
Copies of his book can be purchased online. Please contact us for further details.
What did we learn?
- As parents we learnt a lot about KD and how it affects our individual children. For the doctors, as is common, it answered some questions but raised more. While knowing KD has a higher incident rate in Japan than other countries, I was surprised to learn how much. 1 in 85 children in Japan are diagnosed with KD which is more than the 1 in 100 children diagnosed with Congenital Heart Disease in Australia. Rates are much lower in other countries.
- Genetics is very important in Japanese research. Prof. Onnouchi said “Japanese studies are looking at a common agent in Asian groups. In so doing they also hope to find what is different between Asian and European groups”. Dr Burns suggested Europeans may in fact respond differently. Children in Japan today are likely to have a parent who had KD as a child. There has been an increase in the number of cases in Japan and probably other countries.
- It seems there might be more than one trigger that causes Kawasaki Disease.
- It has been 10 years since the American Heart Association guidelines on KD were written. They are currently updating these. In Australia doctors generally use the AHA guidelines.
- Most KD patients and their families want to know their long term prognosis. There is currently no 30-40 year follow up so there is very little knowledge at this stage for children with medium or giant aneurysms.
- Adrienne in her parent address also made us aware that it is important to be mindful that the impact of KD can extend beyond physical well-being. It can also affect psychological and social well-being of the patient and family. Also, patients are more than their medical diagnosis.
Dr. Kovacs has graciously given us permission to post her presentation. It can be viewed here.
Dr Kawasaki when interviewed said his number one priority is to discover the cause of Kawasaki Disease.
To quote him from a few years ago –
“It was in January 1961 that I encountered a child patient, aged 4 years and 3 months, who was to become the first known case of Kawasaki Disease. [Over] fifty years have elapsed since then. At the time, I had no choice but to discharge the patient as “diagnosis unknown”. Fortunately, the child suffered no sequelae, and is currently enjoying a full and active life as an adult. Since then the incidence of Kawasaki Disease has continued to grow. Why? Why can’t we stop this disease? The reason, unfortunately, is that its cause is not known. At the time I first described the disease, I felt we were on the threshold of discovering its cause, since its symptoms were extremely clear-cut. Despite the efforts of numerous researchers,however, we are still searching. It is my strong hope that young researchers will be able to identify the root cause of this disease”.
At the final dinner a message from this patient, who is now 60, was read out. He thanked Dr. Kawasaki and wished him a Happy Birthday.
Aubry Shackelford, a KD parent is working on the following invention at his company Pegasus Therapeutics. His daughter is the motivation behind what could be a revolutionary way to treat aneurysms in the future. You can find out more on their campaign page here – Click here An article in the Boston Business Journal explaining more about this can be accessed here
The next symposium will be held at Yokohama, Japan in 2018 – 12th – 15th June 2018.
(From the latest edition of the Japanese Parents Association Newsletter)
Videos from the symposium are now available online: Click Here
The following articles were published after the symposium.
- The American Heart Association
- The Huffington Post
- The Toronto Star
- Sourced from American Facebook Page
The following statistics from the American Heart Association were published in their newsletters (Science News) after the symposium with additional information that may be of interest to Australian families
- The incidence of KD is rising in many countries (especially in Asia) but also in the United States. What is happening in Australia is currently unknown (whether stable or continuing to increase)
- The incidence of KD is highest in Japan (239.6 cases per 100,000 children aged <4 years), followed by Taiwan (164.6/100,000 in children <5 years old), and Korea (113.1/100,000 children <5 years old in 2008). It is thought that ~1 in 85 children in Japan are currently affected by KD
- In the United States the incidence was 20.8/100,000 children aged <5 years in 2006. In Australia the incidence is ~9-10/100,000 < 5 years of age, although one third of cases are in those over the age of 5 years. It is estimated that there are about 180 cases diagnosed each year, although this may be an under-estimate – Click Here for more information
- US hospitalizations for KD rose from 17.5/100,000 children aged <5 years in 2000 to 19/100,000 children <5 years of age in 2009. Japan experienced its highest-ever incidence rate in 2010
- The age of children affected may also differ. In northern Europe (Finland, Sweden, and Norway) and Australia, two thirds of patients with KD were <5 years of age, compared with 86.4% of patients in Japan
- In the US KD is most common among Americans of Asian and Pacific Island descent (30.3/100,000 children <5 years of age
- KD occurs with intermediate frequency in non-Hispanic blacks (17.5/100,000 children <5 years of age) and Hispanics (15.7/100,000 children <5 years of age), and is least common in whites (12.0/100,000 children <5 years of age)
- US states with higher Asian American populations have higher rates of KD; rates are 2.5-fold higher in Hawaii than in the continental United States
- Boys have a 1.5-fold higher incidence of KD than girls
- Although KD can be seen as late as adolescence, 76.8% of US children with KD are <5 years of age
- There are seasonal variations in KD: KD is more common during the winter and early spring months, except in Hawaii, where no clear seasonal trend is seen
- Treatment of KD rests on diminishing the inflammatory response with intravenous immunoglobulin infusion, which reduces the incidence of coronary artery aneurysms from ≈25% to ≈2-5%
- Successful surgical treatment of late sequelae of symptomatic coronary artery stenoses (eg, CABG) has been described