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CoRDS Registry

Kawasaki Disease Foundation Australia has partnered with Sanford Coordination of Rare Diseases (CoRDS) Registry.

This is an international and Central registry of individuals of any age who have been diagnosed with a rare disease. It was primarily developed to meet an unmet need for patient registries worldwide.

If you or a family member has been diagnosed with KD, you can help researchers see the whole picture.

To enrol in the CoRDS registry, or for more information, visit www.sanfordresearch.org/cords


Below is my son Izsak's story which I made into a poster to raise awareness of Kawasaki Disease.

I also sent his story around the 24 branch offices of Stringer Clark Lawyers (in association with Ryan Carlisle Thomas<http://www.rct-law.com.au>).

I work at the Warrnambool branch, and as a result a team entered the MCG stomp to raise funds for the Foundation.

Brooke Dean June 2014

 

Kyril,    Brooke (holding Zahli)

and Izsak

before MCG stadium Stomp

 

On 12 May 2014 my son, Izsak was diagnosed with Kawasaki Disease (KD).

In brief, KD attacks the blood vessels and can cause coronary artery aneurysms and other coronary and heart problems if not treated within 10 days of the fever starting. On average, there is one case of KD diagnosed every year at South West Healthcare and even though the disease has been around for such a long time, its cause is unknown and diagnosis is difficult as it is often mistaken for a virus.

Izsak was one of the lucky few that was diagnosed on day 5 of the fever and treated immediately. He has had follow up ECHOs (heart scans) and there are no signs of any coronary issues. However, the four days prior to diagnosis he was tested for so many things that the unknown was terrifying.

On Wednesday 7th May 2014 Izsak was feeling unwell and had a headache. He stayed home from school on the Thursday, still feeling headachy and like he was going to be sick. He also complained of having a sore neck and by Thursday night he had a temperature. Early Friday morning, Izsak came to us and said he had a rash on his inner thighs. At that stage, the rash looked like a heat rash but later spread to his face, in particular his lips and as the days went on changed.

Izsak was tested for many things, and treated for meningitis and micro plasma over the course of the four days, with no improvement. Each day he had blood tests and the results would come back normal except that they showed he had a reasonably serious infection but they could not pinpoint it.

During these 4 days Izsak's temperature never dropped below 38 degrees and peaked regularly at 42 degrees. He was pale with swollen red cracked lips, very washed out but blood shot eyes and the rash had changed again with his cheeks, nose and eyes also swelling.

On the 4th day my husband gave copies of the photos he had taken of the rash over the last 4 days to the paediatrician who emailed them together with the symptoms to the Infectious Disease Specialist at the Royal Children's Hospital who diagnosed Izsak within a few hours as having "incomplete Kawasaki Disease". The Gammaglobulin was ordered and was administered intravenously the next afternoon. Recovery was miraculous following treatment. The fever subsided, the rash started to go away and my cheeky boy returned. We went home.

We have had follow up blood tests, ECG and heart ECHO which are all normal and show no signs of inflammation or damage to the arteries.

There is no test for KD. It is diagnosed on a 5 day plus fever together with other symptoms (see www.kdfoundation.org.au for more details). Diagnosis is difficult and we were very lucky that Izsak had been admitted to hospital so quickly.

Early diagnosis and treatment is critical and also very hard to get. The symptoms are often mistaken for a virus and patients sent home to "wait it out".

I am trying to do my bit and am asking for your support. The KD Foundation is raising money so that one day we know what causes the disease and then we can test for it and maybe even one day vaccinate against it.

I want to take this opportunity to thank the staff in the paediatric ward at Warrnambool South West Healthcare and especially the amazing team of Paediatricians.

Thank you for taking the time to read this and create awareness.

Brooke Dean