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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


Sunstrom Family

 

Written by Aylee

Jack had KD in Aug 1992 when he was 4 months old and at the time he was the youngest child in to have been diagnosed with it. I remember feeling alone and frustrated as each medical practitioner I spoke to could not give me information or long term prognosis.

As typical with KD, Jacks symptoms were red around his eyes, grey skin, swollen and cracked bleeding lips and red tongue, a blotchy rash on his torso and swollen glands. He had been such a content baby but suddenly became agitated and moaned a lot. The skin on his hands and feet peeled whilst he was in the Royal Childrens Hospital Melbourne receiving treatment, which consisted of two separate intravenous gamma globulin over a 48 hour period. This was to help reduce inflammation and hope that his heart arteries would not become too dilated. Jack was quite fortunate as he only has two arteries with mild dilatation and was put on aspirin for a few years.

Over the years we feel as if Jacks immune system is less adequate than most, as he seems more prone to illness, mostly 'Strep throat. We now look after him with vitamins, Probiotics and a light treatment that aids in increasing his immune system ( Biolight) Today he is a pretty healthy happy 16 year old that throughout his life has participated in basketball, skateboarding, and athletics.

KD Foundation Australia has been a great support as it is so nice to share with other parents that have had similar experiences; to give and receive support; to assist in helping to raise funds to enable this to continue and assist with research so in the future we might not all feel so in the dark.

 

Aylee Sunstrom