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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


Jordan Family

 

Written by Angela Jordan (2011)

Our family’s involvement with Kawasaki Disease began in November 1999. Our son, Matt, was 19 months old and had flu-like symptoms for 3 days when I knew that something was wrong. His temperature was between 39-41 degrees and paracetamol was barely relieving it. In hospital triage a nurse notice a large lump towards the back of his neck (an enlarged gland). Matt was irritable, miserable and unable to rest, constantly clinging to me even though he was so hot. 

Refusing to believe that my son just had a virus, we had him admitted and the paediatrician who first saw him mentioned Kawasaki Disease. He said it was very rare and he couldn’t be sure, so they would get some tests done and get back to us.

Days went by with us living in the hospital. Matt was not improving. Again Kawasaki Disease was mentioned, along with Scarlet Fever and a possible tropical disease but as Matt’s symptoms were fairly general and tests were inconclusive, no-one could tell us what was wrong.

Matt had deteriorated further by now. He was finding it hard to walk and didn’t want anyone to touch him. He started to refuse having his bottle and dummy and that was when we realized his mouth was ulcerated. His lips were soon red and swollen, as were his eyes and tongue. Matt then developed a fine rash all over his torso. It was heartbreaking to see such a lively little boy in so much pain! Still the doctors didn’t have any answers… The hospital decided after about a week to try him on a 10 hour IVIG (intravenous gamma globulin) drip which was the best practice for treating Kawasaki Disease. Matt didn’t respond to this treatment at all! This made the doctors re-think that it wasn’t Kawasaki Disease and started to re-run tests for something else.

It wasn’t until we were in our second week in hospital that the skin on Matt’s hands and feet started to peel. The paediatrician said that this was a definite sign for Kawasaki Disease and said it was extremely rare, but sometimes patients need two IVIG’s to make a difference. By this time we were all exhausted, Matt’s veins had all but shut down from so many blood tests and nothing else was left.

Once the 10 hours were up it was like someone had turned a switch on for Matt. He had brightness back in his eyes, the fever had gone and he wasn’t in as much pain. Finally we had something positive! A paediatric cardiologist came to see us and did an echocardiogram on Matt’s heart but everything looked fine. He said that in the rarest-of-rare cases patients can be left with a heart problem and we should check back for a final scan in a couple of weeks.

Matt’s check-up scan brought us devastating news….Matt now had two extremely large aneurysms on his coronary arteries!! He was now to be put on aspirin to thin his blood and would need regular monitoring.

Our next stage in the story occurred when Matt was in Kindergarten. He had been sitting on the floor when he had a sudden chest pain, which he described as “like someone punched me”. Rushed to hospital it was decided that an angiogram should be done to check what his heart was doing. It was from here that Matt was put onto Warfarin, a blood thinner to prevent the risk of him having a heart attack or stroke.

It is now 8 years later…. Matt is an active 13 year old boy who surfs, loves his skateboard and is an amazing sprinter. He takes his Warfarin every night, has blood tests once a month and sees his cardiologist once a year. Kawasaki Disease has had a huge impact on Matt’s life and at times he gets upset and resentful that because he has a heart condition there are limits on what he can do.

Since Matt’s diagnosis I have read many medical papers trying to obtain a better understanding of this disease. My wish would be to find a cure or at least find a test to accurately diagnose this disease early. We believe that because Matt’s treatment was delayed he now has bi-lateral coronary aneurysms. Creating awareness through educating others, including medical staff, is imperative.