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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

Joseph Family

Written by Jennifer

It is 4 years to the day (25th March 2004) that Luke was officially diagnosed with Kawasaki Disease, he was 3 ½.
We had moved from interstate 8 weeks earlier; we were finding our feet; looking for a permanent home and making friends – still only acquaintances at that time.

Two weeks earlier Luke had been a little unwell, a bit of a sore throat and runny nose, nothing to be concerned about. He recovered but was left with a rash – not a red rash; it was just under the skin hardly visible but unusual so I took him to see the local GP. Understandably he was unconcerned and thought it was the recent virus leaving Luke’s system.

However, within days Luke had a high Temperature and the rash became red and angry. Another trip to the GP and a diagnosis of ‘viral illness’. During the next few days Luke’s temperature was constant, Panadol and Paracetamol would not bring it down. Luke’s joints ached and he started to find walking painful so began to crawl – once again a diagnosis of ‘viral illness’ and I am sure the reputation of psychotic mother.

By the fourth visit to the GP Luke‘s neck had become stiff it was both difficult and painful to move; he still had the high temp and painful joints. This time the GP was concerned he may have encephalitis and sent us to the Hospital for further tests. I was scared but so pleased something was actually happening. However, the tests were negative and the Doctor in emergency felt Luke had a ‘viral illness’! We were sent home. The Doctor was concerned however, with the length of time Luke had had a high temperature and told us to return in 24hours if it was still present.

We returned. This time we saw a young Resident. After a short examination she went away and came back with a colleague and a page of printed information. Together they explained that Luke may have something called Kawasaki Disease. I read information which contained the signs and symptoms of the disease – as a lay person it certainly looked convincing to me. Unfortunately the Registrar on duty wasn’t so easy to convince – in his 20 years of practice he had never seen a positive case of Kawasaki

Luke was admitted to hospital for observation overnight. By this time the rash in his groin area was very red and angry looking and the skin had begun to peel. The skin on the tips of his fingers was also peeling and his feet were puffy.

The next morning the Doctors did their ‘rounds’. There were several Doctors including the Resident and Registrar we had seen in emergency and also a Medical Specialist. The Specialist asked about Luke’s symptoms and then asked Luke to stick out his tongue – it was strawberry red! It was official “Kawasaki Disease”…

Now things started to happen. The treatment for Kawasaki Disease is a by-product of blood – from several donors. It is called Immunoglobulin and it needs to be authorised by both the Hospital and the Blood Bank before use – lots of paperwork and more waiting time!!

The Immunoglobulin is given via an I V / drip over 10 – 12 hours. Once the infusion is complete recovery is rapid and if given within the 10 day window long term problems are rare.

Unfortunately for Luke this 10 day window must have passed. A Cardiac Echo showed some swelling of the Cardiac Arteries and his temperature persisted. Luke did show some improvement so he was sent home on the 27th March to return 4 days later for a repeat Echo and check up.

We returned on the 31st March. The second Echo showed 3 giant coronary aneurysms. Luke was readmitted to hospital and given a repeat dose of the Immunoglobulin. This time the change in his physical health was dramatic, but unfortunately the damage to his arteries had been done.

We spent the next several months attending weekly Cardiologist appointments and weekly echoes. It was a scary and difficult time we didn’t know very much about the disease so were unsure what to expect; there seemed to be very little relevant, non alarmist information available.

One thing I do remember vividly is my sister asking if there was anything she could do. I asked her to be a blood donor as there was a shortage and the Immunoglobulin is the only treatment for Kawasaki’s. She not only donated but organised a bus load of other donors from her workplace – a tremendous effort! So many individuals would have benefited from such a wonderful gesture.

Luke now attends annual checkups, there is still a risk of a possible stroke or heart attack but I believe the chances of this occurring are reducing. He still takes Aspirin and Persantin twice daily and will do for the foreseeable future.

He loves his swimming and scouts and is always an active participant in the constant rough and tumble play with his brother.

This year Luke will be turning 8 - on the 8th day of the 8th Month of 2008 to be exact. He was born in the Year of the Golden Dragon – very lucky numbers we are told. And he is lucky! Things could have easily been so different, but now he has a future. We don’t know what that future will hold but then who does? There are no certainties in this life, we take each day as it comes and are grateful for every one of them.

In the meantime we are blessed with a beautiful, cheeky, active yet often serious little boy; he is just gorgeous!

To all parents and guardians trust your instinct, your gut feeling; no one knows your children the way you do. Keep asking questions it is the only way to get answers.