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Niamh’s Kawasaki Disease Story

I was three when I had Kawasaki Disease. My mum talks about it sometimes because even though our GP diagnosed Kawasaki Disease, when mum took me to hospital, the doctors there didn’t think that was what I had.

I had lots (and lots) of tests for lots of things that they thought it might be and all the time I was still really poorly. My mum says I used to cry a lot and I had a high temperature for a very long time.

The doctors thought I might have a rare cancer so we went into hospital the day after Boxing Day to get test results – after I’d been ill for about a month. It wasn’t that though. About another month went by before the doctors decided it was actually Kawasaki Disease. They knew this because at last, they did a scan of my heart and found I had quite a bit of heart damage.

I don’t remember any of this but I’m told I was quite poorly for about a year altogether. I do remember lots of trips to hospital, we seemed to always be going. And I spent a long time when I was at primary school feeling really tired and washed out. My doctor said this was a “chronic fatigue” because of the Kawasaki Disease. I’m ok now though and it doesn’t bother me any more.


I’m 14 now and Kawasaki Disease doesn’t get in the way of anything for me.

I still have trips to the hospital, scans, tests – all of that – but it’s kind of normal for me. I don’t stress about it for sure. I’m not that keen on blood tests mind you (who is?) but you sort of get used to those too. Gets me a day off school every now and again – and I always have a hot chocolate with extra cream after a blood test. Seems fair to me!

I do wish the doctors had treated me for Kawasaki Disease when my GP said that was what it was. There’s a good chance I wouldn’t have heart damage if they had. I’ve done some fundraising and stuff at school for Societi, so they can get Kawasaki Disease better known – because I think more doctors and people need to know what to look for in Kawasaki Disease. I hope that helps other children when they get ill.

I’ll be looked after by doctors for the rest of my life because of the damage to my heart from Kawasaki Disease. I know I need to stay fit and healthy and all of that but it’s not going to stop me from doing what I want to do.