Kawasaki Disease Australia in Melbourne, Victoria, Australia | Non-profit organisation

Kawasaki Disease Australia

Locality: Melbourne, Victoria, Australia

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25.01.2022 Our friends over in the US have prepared some FAQs in relation to KD & COVID-19. We will be pulling together something similar on a more local level and will share with you all soon This has some really great information

25.01.2022 This is so well written , a blog by a KD Kid Mum in Canada. I’m sure we can all relate to her words and are currently all feeling this way. A good article to share https://isaiahskdjourney.blogspot.com//kawasaki-disease-pa

24.01.2022 Interesting article in relation to links between KD and COVID-19. The Foundation’s Medical Advisor Professor David Burgner responds... https://www.theguardian.com//australian-doctors-on-alert-a The latest Australian news articles will be shared on our website tomorrow.

24.01.2022 Vale Tomisaku Kawasaki 7 February 1925 - 5 June 2020 It is with great sadness that we hear of the passing of Tomisaku Kawasaki, aged 95. Renowned for the discovery of Kawasaki disease in 1967 and for over 50 years, he has been dedicated to advancing awareness and research into Kawasaski disease. His efforts have made a difference to children’s health across the world.... We will forever be grateful for his knowledge and passion toward Kawasaki disease, and for those of us fortunate to meet him, we will treasure the moments of time we were able to spend with him. Our deepest sympathy goes out to Tomisaku Kawasaki’s family, friends, colleagues, and Kawasaki disease communities. Our love and thoughts are with you all. https://www.japantimes.co.jp//tomisaku-kawasaki-pediatri/

23.01.2022 We recently heard from our friends at the Japanese Society of Kawasaki Disease who are also watching what is transpiring with the recent media reports around Kawasaki Disease and COVID-19. We last saw them at the International Kawasaki Disease Symposium in Japan in 2018 and hoping to catch up again at the next symposium in 2021 so we're keeping our fingers crossed that international travel will return by then! They have reported a reduction in KD presentations during Feb-April and are continuing to pursue more Kawasaki Disease research. It is always great to hear from them and we look forward to hearing about their progress.

23.01.2022 We are humbled by the generosity of Lane McNeill, who is embarking on an epic challenge to hike the Bibbulman Track. The Bibbulmun Track is one of the world’s great long distance walk trails, stretching 1000km from Kalamunda in the Perth Hills, to Albany on the south coast, winding through the heart of the scenic South West of Western Australia. Lane's motivation is to support his niece Chloe, in raising funds and awareness for the Kawasaki Disease Foundation Australia. Chl...oe was only 8 months old when she was diagnosed with Kawasaki Disease. Chloe developed 2 giant aneurysms which require lifelong cardiology treatment and care. Lane will be camping on the track along the way and aims to complete the hike within 6-8 weeks, stating around June 2021. Please make a donation to support Lane to raise a target of $5000 for the KD Foundation. Let's get on board and do this for Chloe!! We are looking forward to following Lane's journey. https://personalchallenge.gofundraise.com.au//Lane-50153235

22.01.2022 Kawasaki Disease Awareness Campaign day 26 today marks the final day of the campaign as we have now reached 26 Jan, Kawasaki Disease Awareness Day!! There are so many wonderful and creative ways to raise awareness of Kawasaki Disease or fundraise. Some of the events that our members have participated in include music festivals, fitness challenges, donation days at day care/school, dress up days, morning teas, putting up posters in the local community, health services infor...mation sessions, silent auctions, evening functions, tin collections, and just talking to people about KD. The awareness campaign is just one way to continue raising awareness! The greater the awareness, the greater the knowledge. We have loved sharing some of our Australian Facts and information with you all, and holding our first webinar! We hope you learnt something new and connected with others impacted by KD. KD awareness does not stop, so please continue to tell those around you about KD so that it becomes more widely known and considered. We hope that one day the cause of KD can be determined, which could then lead to early diagnosis, timely treatment, prevention or even a cure! Thank you for following and supporting the @kdfoundation campaign #kdawarenessdayAU2020 #KDday2020 #kdheartonyoursleeve #kdfoundationau #getkdonthemap #kdawarenessmonth #kdfacts #kawasakidisease #kawasakidiseaseawareness #rarediseases #acquiredheartdisease #4kd

21.01.2022 ** LATEST NEWS ** With the recent media spotlight on Kawasaki Disease resulting in news reports across the globe of a possible association with COVID-19, we have been working collaboratively behind the scenes with many other Kawasaki Disease support organisations and specialists around the world. This collaborative approach ensures consistency in information, and helps to keep us all informed about the latest understandings of Kawasaki Disease and its impact on people worldwi...de. We are incredibly grateful for these relationships with other key Kawasaki Disease support organisations and we have come together to issue a Shared Statement to address the recent media reports. Special thanks go out to Societi, (the UK Foundation for Kawasaki Disease), Rari ma Speciali, (Kawasaki Disease Italy), Kawasaki Disease Canada, Asenkawa, (Kawasaki Disease Spain), and all our medical advisors for your shared wisdom and commitment to supporting our Kawasaki Disease communities. We thank you To view our shared statement head over to www.kdfoundation.org.au/international-collaborative-respon/

19.01.2022 Only 5 days to go until our webinar! If you haven’t done so already please head over to our Facebook page and click on the link to register, or copy the link below: https://docs.google.com//1FAIpQLScUFg8J-v6lx_dp4S/viewform... #kawasakidiseaseawareness #kawasakidisease #medicalexperts #webinar #educateyourselves #kdauandyou #4kd #acquiredheartdisease #kdcommunity #kdfoundationau

19.01.2022 To raise awareness of Kawasakai Disease, Veronica Nau is sharing her son Logan’s journey with KD. Thank you Veronica! Logan was five when KD struck. It started with a sore throat and dark splotches on the back of his neck. Four days and three visits to two doctors later, we had three different diagnoses and a little boy too weak to eat, drink, toilet himself or even stay awake. I walked out of work and took him to emergency; to this day the feel of carrying his little body i...n my arms is burnt into me. He’d lost so much weight and barely had the strength to speak; he’d just watch me with bloodshot eyes and cry when he peed because it hurt so much. He was formally diagnosed on day five. Now at seven years of age Logan’s doing much better. KD has left him with some mild coronary damage and a heart murmur, and he still has occasional joint pain and tires out faster than his classmates. He’s under the care of a fantastic paediatrician and cardiologist, and came off blood thinners about a year ago. We’re lucky to have caught it relatively early, especially since I’d never heard of KD until that night in the emergency room. We were completely unprepared, and I felt such guilt for knowing nothing about it and being unable to make it better. I’m amazed at the lack of awareness around KD especially given how critical it is to treat it early, and the lack of early diagnostic options, something I’d really like to see progress in. COVID-19 has brought worldwide attention to KD, a small silver lining, and we hope this means greater focus on researching treatment and diagnostic options. But we’re getting there, and we’re so proud of how brave he’s been through such a painful ordeal, of brain swelling and oedema and needles and liver scans and skin peeling off and photosensitivity and all of it. Children are so resilient, and we owe our extraordinary little people the best chance in life we can give.

18.01.2022 Sweetheart Day - 14th February 2021 Please join us in supporting @heartkids on 14 February for the 6th annual #sweetheartday (or show your ) raises much-needed awareness of congenital and childhood acquired heart disease. The campaign is focused on #valentinesday (February 14) which is also International Congenital Heart Defect Awareness Day. This day is important to showcase all the brave heart warriors that live with the impact of childhood heart disease every day. ... More information available at www.sweetheartday.org.au Here are 2 of our KD Heartkids and their stories Billie-Grace was diagnosed with KD at age 16 months old in 2014, and underwent Bypass surgery at age 2.5 years old in 2015 Aurora was 7 weeks old when she was diagnosed with KD. Aurora suffered a cardiac arrest and was placed on ECMO as a result of misdiagnosed KD. #heartkids #sweetheartday2021 #acquiredheartdisease #congenitalheartdisease #childhoodillness #kawasakidisease #kdkids

18.01.2022 A focus in news headlines is the possible connection between Kawasaki Disease and COVID-19 in children. Here is another article with information from our medical adviser Dr David Burgner. The more people that hear about KD, the greater we are contributing to awareness and further research possibilities

18.01.2022 This has got to be some of the most exciting news in Kawasaki Disease diagnostic development!! "SkylineDx, announces a collaboration agreement with Professor Michael Levin’s group at Imperial College London and Professor Jane Burns’ group at University of California San Diego School of Medicine, for the joint development of a diagnostic test which will facilitate early diagnosis of Kawasaki Disease (KD)."... "A laboratory test that supports physicians in diagnosing KD rapidly and accurately, is not yet available. This collaboration aims to assess the technical feasibility of such a test on a broadly used lab platform: real-time PCR." The Kawasaki Disease Foundation Australia had the opportunity to meet with SkylineDx to provide insights on the benefits of a diagnostic test would have for those diagnosed with KD, and their families/carers. We are looking forward to following progress of this diagnostic test! https://www.skylinedx.com/news

17.01.2022 With news coming out of the UK in the last 24 hours of an urgent alert warning doctors of the Kawasaki disease-like condition presenting in kids also with symptoms of COVID-19, could there be some kind of link? It is not known yet, but this will be interesting to follow. Our KD advisor David Burgner, provides some insight into this. There is also a segment on tonight's ABC news. Although this can be alarming, Dr Burgner said parents should not be overly worried "These are rare conditions so the risk to an individual child is low, so we can be reassuring about that".

17.01.2022 Day 24 Today we are grateful to Kate Elise from our KD community, who has kindly shared her daughter Rhea's Kawasaki Disease story. Thank you Kate for raising Kawasaki Disease Awareness. Rhea became unwell in February 2020 with a cold/flu and had a significant cough that lingered for 6 weeks after she got better. We had taken Rhea to the doctor multiple times who assured us she just had a viral infection and it would take a while to pass. ... On 26 March, at 9 months of age, Rhea became very lethargic and had fevers above 39 degrees. We took her to our local hospital that night who thought she may have mild pneumonia. Swabs were taken as this was about the time that COVID-19 first hit Victoria and we were sent home. The next night we were back in the hospital with Rhea as she was very dehydrated, she was given pain relief and fluids and we were sent home - still with a fever. The next morning Rhea had a few little red dots on her back and chest, and within an hour or so we were back at the hospital with Rhea being covered almost head to toe in a very nasty rash. Rhea was so dehydrated that the doctors and anaesthetists tried for hours to find a vein to administer fluids and pain relief and were unsuccessful. We were then transferred to a bigger hospital. Rhea was so swollen she was barely recognisable, her eyes were completely bloodshot, and her rash now covered her entire body. After a few days of lots of tests with no answers we were fortunate enough to meet a doctor that suggested Kawasaki Disease. On day 7 since the beginning of fever, the team decided to treat Rhea with IVIG overnight while she slept. We were so fortunate that this doctor picked up on it sooner rather than later. Rhea was sent home 4 days after receiving the treatment, only requiring steroids and aspirin for a short period after being released from hospital. After her follow up echocardiogram showing that the slight dilation from the first scan was totally gone, Rhea was discharged with absolutely no lasting effects from Kawasaki Disease. #kdawarenessdayAU2021 #KDday2021 #kdheartonyoursleeve #kdfoundationau #kdawarenessmonth #kawasakidisease #kawasakidiseaseawareness

17.01.2022 It's positive to read some more information coming out of The World Health Organization (WHO). Recent media reports shared stories of children overseas having an inflammatory illness with symptoms similar to Kawasaki Disease. This illness is now known as multisystem inflammatory syndrome in children (MIS-C), the condition has also been referred to as Paediatric Inflammatory Multisystem Syndrome Temporally associated with SARS-CoV-2 (PIMS-TS). WHO has now developed a prelimi...nary case definition for this condition, announced via a scientific brief on 15 May. More information contained in the link. https://www1.racgp.org.au//who-develops-preliminary-case-d See more

16.01.2022 The focus on Kawasaki Disease globally raises many emotions from those that have been through the Kawasaki experience, whether it be themselves or their child diagnosed, it is an incredibly stressful and often traumatic time. To date the cause has not been determined, and the more research we have, the more we are stepping closer to the answer. It is amazing that The WHO will be investigating whether the coronavirus causes some children to develop a rare inflammatory disease after health officials in the U.K. warned doctors over the weekend that Covid-19 could be causing a rare inflammatory condition in children. Hopefully this will also shed some further light on the mystery of KD!

16.01.2022 The Conversation has an informative piece about Kawasaki Disease and COVID-19, by Australian KD specialists David Burgner, Davinder Singh-Grewal, Linny Kimly Phuong, and Ryan Lucas.

15.01.2022 Very productive meeting today with the #kdfoundationau #talkingcovid19 #kdawareness #foundation #volunteers #team #kawasakidisease

14.01.2022 Day 21. KDAU Fact THE CAUSE OF KAWASAKI DISEASE Unfortunately, KD continues to be one of the great mysteries of medicine, and the cause has not yet been identified despite much research and theories!! However, it is thought that you need to have specific genetic risk factors in order to be predisposed to KD. Doctors and researchers worldwide continue in their quests to try and determine what the cause of KD is. There are a number of theories floating around, however the cause... remains unknown. This is why raising awareness is so important, to ensure that all cases of KD are identified within the first 10 days of the onsent of symptoms, which maximises early treatment opportunity and less likelihood of coronary damage. This is also why continued research is fundamental. If a cause can be identified, then further research could be carried out for prevention! #kdawarenessdayAU2021 #KDday2021 #kdheartonyoursleeve #kdfoundationau #findthecauseofKD #getkdonthemap #kdawarenessmonth #kdfacts #kawasakidisease #kawasakidiseaseawareness #rarediseases #acquiredheartdisease #4kd

14.01.2022 Day 20. A massive thank you to Megan Crisp for raising awareness of Kawasaki Disease through sharing her daughter Chelsea’s story. My daughter Chelsea was diagnosed with Kawasaki Disease at the end of July 2018. She was only 11 months old. ... Like other children who are being considered for a KD diagnosis, Chelsea was tested for several other illnesses. After ruling out measles and Scarlet Fever, Chelsea’s medical team were pretty sure that she had Kawasaki Disease and a decision was made to start treatment of IVIG just in case. Chelsea was diagnosed with Kawasaki Disease on day three of her illness. Chelsea was given the ‘all clear’ from cardiac damage at her 6 month echo appointment at the Children’s hospital. Before Chelsea’s diagnosis, we had heard of Kawasaki Disease but really had no idea what it was nor how serious it was! We found it very interesting that different children can have totally different symptoms but still be diagnosed with KD. Chelsea’s case was diagnosed as a-typcial Kawasaki Disease and she was followed by some student doctors which will help increase their knowledge and awareness of KD. Our biggest fear was the day we were told that the doctors didn't know if Chelsea would survive or not, as she had pretty much been unconscious for 2 days! Our biggest hope was that Chelsea would recover with no ongoing issues and she is now 3 and a half years old. We would love to see a simple blood test invented for early and preventative diagnosis of Kawasaki Disease.

13.01.2022 Day 18. KDAU Fact IVIG Intravenous Immunoglobulin (also known as IVIG or gamma globulin) is the primary and most effective treatment for KD and can significantly reduce the incident of coronary complications if given early. IVIG is a solution of antibodies from blood plasma donors and is given through the vein. Thousands of donors are needed to make just one dose of IVIG!! WOW!!! Some children will need a second dose of IVIG, and very rarely other medicines may need to be us...ed. Please consider donating plasma, it is a lifesaver! If you're in Australia and would like to be a plasma donor please contact @redcrossbloodau #kdawarenessdayAU2021 #KDday2021 #kdheartonyoursleeve #kdfoundationau #redcrossau #getkdonthemap #kdawarenessmonth #kdfacts #kawasakidisease #kawasakidiseaseawareness #rarediseases #acquiredheartdisease #4kd

12.01.2022 Hi KD Family I am very excited to share that I have just conducted an interview for #channel9news which will be aired on this evenings news at 6pm AEDT and possibly the afternoon news at 4pm. Please be sure to tune in to see more about #kawasakidisease in the Australian media ... #kawasakidiseaseawareness #kdfoundationau #raisingawareness Cheers, Meagan, President KD Foundation Australia

09.01.2022 In response to enquiries about Kawasaki Disease and COVID-19 stemming from recent media stories, please head over to our website where we have provided more information in both our news and resources sections. Our medical advisor, Dr David Burgner was on abc news yesterday and has been quoted in articles for the abc and the guardian. Please continue to be vigilant in looking out for any sypmtoms of KD or COVID-19 and seek medical assistance if you are concerned.

07.01.2022 Day 25. KDAU Fact. CAN KAWASAKI DISEASE BE PREVENTED? Unfortunately, no. As there is no known cause of KD, there is no way at present to prevent KD from occurring. The most important thing for a person who has KD is prompt diagnosis and treatment. Treating KD within the first ten days of illness onset can decrease the chance of long term affects including coronary artery damage or heart disease. Researchers in Australia and across the globe are working hard to try and establi...sh a definitive cause, which may in turn aid in the possibility of prevention. #kdawarenessdayAU2021 #KDday2021 #kdheartonyoursleeve #kdfoundationau #getkdonthemap #kdawarenessmonth #kdfacts #kawasakidisease #kawasakidiseaseawareness #rarediseases #acquiredheartdisease #<34kd

06.01.2022 It is nice to have this reassurance from MCRI Professor Fiona Russell that news of COVID-19 complications such as Kawasaki disease were unlikely to affect Australian children given our success at flattening the curve. We hope things continue to move in a positive direction and will still be watching with great interest on how this is affecting other parts of the globe.

06.01.2022 In the past 48 hours, an alert was issued to clinicians by Safer Care Victoria regarding Paediatric Inflammatory Multisystem Syndrome (PIMS) that is believed to be associated with COVID-19 and having similar symtoms to Kawasaki Disease, following a confirmed case of PIMS in a child in Melbourne, and other suspected cases. You can hear more about this, incuding some information from our medical advisor, Dr David Burgner, on abc: https://www.abc.net.au//health-authorities-watch-/12630018 You can also read the Safer Care Vic alert: https://www.bettersafercare.vic.gov.au//alert-paediatric-i

05.01.2022 Hi KD Family, Please see the link to the story I did today with #channel9news. We wanted to raise awareness about Kawasaki Disease and based on the population and statistics that we’re seeing in the US & UK, Health advisors are indicating that the impact of this in Australia will be low, if any. Please note that it was a personal decision for us to take our kids out of daycare.... If you have any concerns about COVID-19 or Kawasaki Disease you should reach out to your child’s GP and also please continue to reach out to us if you need support. Please feel free to share this from our Facebook page #kdfoundationau

05.01.2022 Dr Burgner talks with SBSNEWS about Kawasaki Disease "Prof Burgner said there has been no clear data to suggest COVID-19 has caused increased cases of Kawasaki disease". https://www.sbs.com.au//what-is-kawasaki-disease-and-how-i

04.01.2022 Great to hear our medical advisor talking about Kawasaki Disease and PIMS-TS.

04.01.2022 National Volunteers Week ** Monday 18 May Sunday 24 May2020 ** This week marks National Volunteer Week. The @kdfoundationau wants to thank it’s amazing Volunteers for all that they do to help raise awareness, support families and raise funds for research for Kawasaki Disease. We couldn’t do it without you And what a way to welcome our 5 new amazing Volunteers to the Foundation! So excited to have you all on board and looking forward to working with you all x... #nationalvolunteerweek #NVW2020 #waveforvolunteers #changingcommunities #changinglives #kdfoundationau #kawasakidisease #rarediseases #kawasakidiseaseawareness #raisingawareness #sograteful #heartdisease #childhooddisease #earlydiagnosis #savelives

02.01.2022 Day 19. KDAU Fact ECHOCARIDOGRAM Once a diagnosis of KD has been made, it is important to check if the heart is ok. An echocardiogram, also known as an echo, is an ultrasound scan used to check the function of the coronary arteries and heart, and usually undertaken within the first two weeks of diagnosis. Children with Kawasaki Disease often need to see a paediatric cardiologist, sometimes multiple times, for these scans. Families that reside in a rural area, may have to trav...el to a large city to access a paediatric cardiologist. How soon after your/your child’s diagnosis was the first echo? #kdawarenessdayAU2021 #KDday2021 #kdheartonyoursleeve #kdfoundationau #getkdonthemap #kdawarenessmonth #kdfacts #kawasakidisease #kawasakidiseaseawareness #rarediseases #acquiredheartdisease #4kd

02.01.2022 Dr Burgner shares some insight with news GP regarding PIMS-TS occurrence in Australia. https://www1.racgp.org.au//further-cases-of-pims-ts-likely