Why I do what I do…
To mark Kawasaki Disease Awareness Day, 26 January, our Founder, Rachael, writes on why she raises awareness of Kawasaki Disease.
26 January 2020
Imagine seeing the trajectory of your child’s world shift, dramatically, negatively. And as you “watch” you’re powerless. Absolutely powerless to act.
Imagine it’s worse than that in fact. Because you KNOW something is wrong – very wrong with your child. And even though your brilliant GP has diagnosed something called ‘Kawasaki Disease’, no-one else wants to listen. Hospital doctors dismiss the diagnosis. “It’s just a virus.”
Imagine too that as your child gets more and more unwell, you try, with every ounce of strength you can summon, every logical argument you bring forward with the doctors, picking yourself up from every repeated dismissal and defeat, all the research you do – every emotional ask you make… It’s not enough. Things aren’t getting better.
And still, no-one is listening.
Irreparable heart damage
So imagine then being told months later, that your precious, tiny child – the centre of your world, has irreparable heart damage. Because, you know what? There was something wrong, very wrong. They had Kawasaki Disease. And now “there’s nothing we can do”.
I remember our consultant telling me that treatment would start, focused on avoiding clots in the coronary artery aneurysms that this disease, untreated, had led to. I will never – ever – forget sitting in the consultation room when our consultant explained that the risk now was a clot, which could lead to a heart attack. Shocked, afraid, I asked – “If that happens, what do I do…?” Our doctor lowered her eyes. And the words that followed still ring in my ears today. “There won’t be anything you can do. Just ring 999.”
The year that followed was hard. Treatment and hospital visits. Complications. Worry. Hyper-vigilance. A very unwell little one changed the dynamic in our family too. The impact was huge.
A slow recovery
Gradually there was recovery. It took a long time and was very much “one step forward, two steps back.” But there was recovery – for all of us. And we were blessed too, with a wonderful GP who found us a consultant who was a national expert in this disease – a disease that no-one seemed to know about. Having his reassuring, expert clinical care and his kindness, to smooth our journey, meant so much.
Today, we know we are lucky. My child has grown up, safe and happy. But life is different. The future means lifelong care – treatment and specialist support. That’s our “normal”. And that’s something I hear often from affected families – “We’re getting used to our new normal.”
But when I reflected, I quickly got to a place – a place which I still get to – that whilst this is our reality, it’s not normal! And over the years I became more and more determined that this new “normal” is something families like mine just shouldn’t have to adjust to. I heard over and over again experiences of children with Kawasaki Disease which mirrored ours. Children treated too late. Or children not treated at all — because the disease just was not recognised. And I resolved to try – to do whatever I could, to change that. I set up our charity in 2015, Societi – the U.K. Foundation for Kawasaki Disease. It’s primary aim – to raise awareness.
#1 cause of acquired heart disease in our children
Kawasaki Disease is the leading cause of acquired heart disease in U.K. children. With over 1,000 hospital admissions* for Kawasaki Disease in the U.K. each year and rapidly on the rise, it’s more common than bacterial meningitis and measles – even with the current outbreak. As parents, we’d like to think we knew these serious diseases. But few parents and far too few doctors know Kawasaki Disease. Increasingly common and just as serious – I’m committed to changing that.
Why? Because research** shows early treatment means better outcomes. Children treated quickly have a much lower risk of acquired heart disease. But quick treatment can only happen with quick diagnosis. And that can only happen if people know Kawasaki Disease – if they expect to see it and doctors are ready to treat it.
26 January is International Kawasaki Disease awareness day, the prompt for this blog. Since 2016, my charity has led the U.K. leg of this global campaign. So – I’m #sorrynotsorry that during Jan all my social media is FULL of awareness info! Hard hitting facts like:
- 19% of all children affected by Kawasaki Disease in the U.K. develop serious, lasting heart damage
- 39% of affected infants, that’s babies under one year, will have serious, lasting heart damage
- These children need lifetime specialist care
- The numbers of affected children are growing. Alarmingly. A three to fourfold increase in UK hospital admissions in the last decade
And Kawasaki Disease for a few children every year, is fatal. Those with lasting heart damage face increased, lifelong risks of life threatening heart problems. This position is unacceptable, by any measure. We urgently NEED to get this disease known if we are to change things – if we are to stop the devastating heart damage and loss which today affects too many children, and their families.
A remarkable team – creating change
So every day, in fact, is a new opportunity for awareness in my book. And our ever-growing team of truly remarkable volunteers, doctors and healthcare professionals across the U.K and beyond, who passionately support our shared cause, make sure that x365 days each year, we work to get Kawasaki Disease known – #TeamSocieti
For as long as I have breath in my body, THIS will remain my aim. And thanks to the phenomenal team we have built over the last few years, I am not alone. There’s a movement for change to protect tiny hearts, of dedicated families, fundraisers, donors, corporate supporters and many amazing clinicians too. We are passionate about this – we are determined. Together we WILL get Kawasaki Disease known. #ForOurChildren
For more info, please visit societi.org.uk, follow us on Twitter, Insta and Facebook. Join the movement to protect our children from this disease. Every new voice supporting our cause, every donation helps us achieve our goals faster. And protecting our children from acquired heart disease is a pretty decent cause to get behind, don’t you agree?
I’m biased, of course.
Rachael, Societi Founder
*Societi Foundation research with UK NHS Trusts and Healthcare Boards, 2019
** Kawasaki Disease: a prospective population survey in the UK and Ireland from 2013 to 2015, Professor Robert Tulloh et al