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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


Mates Family

Written by Cameron

We went to my Cousins in Sale on Christmas Day 1994. We then went back to stay with my grandparents in Morwell. The next day I woke up with a stiff neck. This was the start of my sickness.

Over the next week I saw lots of different; doctors. I felt really sick. I couldn't move my neck and had a high temperature. My mouth was so sore I couldn't open my teeth. I couldn't even keep medicine down so I lost lots of weight. Finally after doing blood tests my doctor sent me to the Royal Children's Hospital.

I spent many hours in the Emergency Department seeing different doctors. I had X-rays taken of my neck, a needle in my back, more blood tests and a drip put in my arm. After a long time I was admitted to Ward 5 West.

It was sad having to spend my 7th birthday in hospital. The nurses made it better by giving me a cake. Dr Grimwood let me go downstairs to McDonalds, although I didn't feel like eating. Mum stayed in hospital with me the whole time. Dad came to visit every day.

After a week the doctors found out I had Kawasaki Disease. It is very rare. It has left me with a large aneurysm in my heart. I have to have blood tests regularly because I am on warfarin to thin my blood. I have to go back to the hospital for check ups every few months. I have an Echo and ECG. Once a year I have a Nuclear Scan. I don't like having this done because they have to put a needle in my arm to put special dye in. Soon I have to have another angiogram done to see exactly what is happening inside my heart. We do not know what will happen after this.

I only remember little bits of when I was first sick and in hospital. Mum has a special photo album to help me remember. Some bits I can't remember and some bits I don't want to. I blocked out my life before I got sick but now I've found out I don't need to do this anymore.

It is hard at school because most of my friends are playing games I can't do. Because of my sickness and medicine, I can't play any contact sports. I think some of my friends understand how I feel but a lot of them think it's funny to upset me. I have learnt to put up with it and not let it worry me any more. I have found it is best to ignore the person or children and walk away. If you keep doing this they will eventually stop. They want you to get upset and show it. I have found other things I can do instead. I enjoy learning music and play in the school band. I really love playing Table Tennis although sometimes I am too tired to play my best. I play competition on Friday nights and I have just become an Associate Umpire. I have coaching from Mark Smythe who has played in the last two Olympic games. I also like working on the computer and can spend all day on one. I am looking forward to starting Secondary School next year.

Update 2002

In December 2001 I had an angiogram. It showed my artery with the aneurysm had narrowed in 2 places. The doctors couldn't do a simple operation, so they had to do an open heart bypass surgery. We decided to go to Monash hospital instead of the Children's hospital as the adult doctors had more experience in this procedure. I knew the doctors and nursing staff from when I had the angiogram so I didn't feel scared. They normally treat adults not teenagers so they treated me like a king. At 14 I am the youngest person they have done. I don't remember anything about the first 2 days because of the pain killers. The worst part was taking all the tubes and stitches out. The best part was getting to go home. The operation was a success and I'm now off Warfarin and all the blood tests. I am only on aspirin. When I fully heal I should be able to do anything I want. I will however need to be monitored for the rest of my life. I have just started Secondary School and I am really enjoying my improved life.

2008
I am now 20 years old and I am doing really well. I have finished Secondary School and currently doing a Diploma in Information Technology (Systems Admin).

Cameron when he was in
hospital for the first time.

Cameron receiving his 250
game award for Table Tennis 2007