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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


Triantafillopoulos Family

 

Written by Faye

My daughter Anastasia (who is four) is currently on her tenth day recuperating from Kawasaki Disease. She is at home now. She was diagnosed with it only two days after the onset of infection by the ER at the RCH and was given the gammaglobulin that day so we are extremely lucky and hopefully she will not have any cardiac problems.

As you can imagine this is all a shock to us and we are still coming to terms with the whole thing, not the least of which was that our visit to the hospital the first day resulted in a diagnoses of an URTI virus and sent home only to come back the next day with what seemed subtle but quite alarming symptoms; and after insisting that we not leave the hospital until the consultant on duty reviewed the Registrar’s diagnosis and a series of blood tests to be performed. If we had not done this the fever would have continued and unbeknown to anyone the damage to her heart would certainly have occurred.

I believe this disease is not widely been made aware of and because the doctors tend to dismiss all fevers initially to be viral I think parents in some cases unwittingly tread a fine line between common child colds and flus with a life threatening illness that will have lifelong repercussions.

I would like to become involved in the Kawasaki Disease Foundation as I feel very passionate about avoiding this disease the label of the most common cause of acquired cardiac disease in children.

Faye Triantafillopoulos

Update June 2009

Stacey has had the last echocardiogram, ECT and the cardiologists review and; thank God there is no damage at all caused by the inflammation on her heart vessels. The Specialists are very happy with the results thus no more prophylactic aspirin and all activities can be resumed, (I decided to keep Stacey home from a lot of physical activities just to be on the safe side although I knew the chance of her having an aneurysm in her individual circumstances were very remote due to her very timely medical intervention). Stacey now only needs 6 monthly echocardiograms etc for the next year and then no more.

This episode now seems like a bad dream for us upon which we have woken up from and pushed aside to resume our normal lives but we will always be mindful of the many little angels who have to deal with lifelong problems Kawasaki Disease has bestowed on them. There may be more stories similar to mine where this disease appeared out of nowhere and has now seemingly disappeared into oblivion. I don't know, although whomever I tell, I am reassured that we were the lucky ones.