Q & A

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What is Kawasaki Disease?

Kawasaki Disease is a type of vasculitis. It mainly affects young children but it can affect people of any age.  It can be a serious illness as it can cause coronary artery damage – damage to the blood vessels in the heart.  If treated early however, the majority of children recover well. Kawasaki Disease has a range of symptoms including a characteristic and distinctively persistent high fever for five days or more, rash, bloodshot eyes, “strawberry” tongue, cracked, dry lips, redness of the fingers and toes (sometimes skin peeling after ten days or more) and swollen glands in the neck – often just on one side.  Kawasaki Disease can be present with some (partial) or all (full) of these symptoms. If a child has a persistent fever with two or more of these symptoms, please think Kawasaki Disease.

Is there a test for Kawasaki Disease?

No, as yet there is no specific test to help doctors diagnose Kawasaki Disease. A number of tests may be performed by doctors as they work to establish a diagnosis for your child and these could include:

  • blood tests – looking for signs of inflammation
  • temperature checks – as Kawasaki Disease has a distinctively high and persistent fever
  • an electrocardiogram (ECG) which allows doctors to check the rhythm of the heart
  • a heart scan using ultrasound (echocardiogram or cardiac echo) from which doctors can check whether a child’s heart is being/has been affected by Kawasaki Disease

Doctors also look for the specific symptoms of Kawasaki Disease – and they may ask you if you have noticed symptoms over the last few days – as Kawasaki Disease symptoms can appear one after the other over a number of days sometimes, not always all at once.

Kawasaki Disease - Who does it affect?

At onset, Kawasaki Disease primarily affects young children with over 75% of those affected being under 5 but it can affect any age group.  And because the damage it can cause can be lifelong, thousands of children, young people and adults are affected in the UK today by Kawasaki Disease.

How many people are affected by Kawasaki Disease?

Increasingly common, Kawasaki Disease affects hundreds of children and young people in the UK each year.  Research by Societi (June 2016) shows hospital admissions for Kawasaki Disease have increased fourfold in the last ten years. Globally Kawasaki Disease is on the rise – on average incidence is doubling every ten years.  No-one knows why – research is ongoing to understand the cause of the disease and explain why it is affecting more children.

Kawasaki Disease - What can I do?

Kawasaki Disease is often misdiagnosed or diagnosed late, sometimes because a full symptom ‘picture’ is wrongly being awaited – or simply because not enough people know about Kawasaki Disease. If you have a child – or if you are a doctor and see a child with persistent fever,  and two or more of the symptoms above, please THINK Kawasaki Disease.

In between times, start a Kawasaki Conversation – make sure friends, relatives, colleagues and your local schools are aware of Kawasaki Disease.  Awareness is urgent – Kawasaki Disease is serious.  Awareness will make a difference.  You can make a difference.  Contact us if you’d like to help raise awareness.

Isn't it just really rare?

No! Hundreds of children and young people are affected by Kawasaki disease each year in the UK – and it’s the leading cause of acquired heart disease in children – it’s time we changed that!  Worldwide, Kawasaki Disease incidence is doubling every 10 years.

We URGENTLY need parents and doctors to know the symptoms of Kawasaki Disease – and for Doctors to EXPECT to see it: be READY to treat it. For too long the association of Kawasaki Disease and ‘rare’ has hampered investment in research – but critically, this label has adversely affected prompt diagnosis – because clinicians don’t expect to see it.

WE WANT TO CHANGE THAT!  Why?  Because research shows (BPSU Study 2013-2015) that EARLY diagnosis and treatment can improve outcomes – for our children.

Can my child get Kawasaki Disease again?

Having Kawasaki Disease more than once is unusual, but it can happen.  However, only about 1 in 50 children diagnosed with Kawasaki Disease go on to be affected a second time.

Kawasaki Disease - How is it treated?

Children with Kawasaki Disease are treated in hospital by specialist doctors. The medication given (intravenous  immunoglobulin (IVIG) and aspirin – often also with corticosteroids) is used with the aim of reducing fever and preventing heart damage / coronary artery aneurysms.  Sometimes other drugs are used as well, in support of these three main treatment approaches.

How can I help raise awareness of Kawasaki Disease?

There is a huge amount you can do to raise awareness of Kawasaki Disease. Getting people to know the disease so that it can be diagnosed early, and children treated quickly is one of the most powerful things we can do in the fight to combat Kawasaki Disease. It is little known in the UK currently – but the disease is on the rise and we urgently need to make Kawasaki Disease well known.

On the Raising Awareness section of our website you’ll find information and resources on how you can help – how you can start a ‘Kawasaki Conversation’ in your own community or workplace.  The page includes downloadable and printable information which you can share. If you’d like to plan a specific awareness raising event and would like some more information – please contact us and we can help!

How do I make a donation to help your work?

Thank you for considering making a donation! You can donate easily via PayPal here.

If you’d prefer to send us a cheque, please make it payable to Societi Foundation and post it to Victoria Court, Holme Lane, Winthorpe Newark, Notts, NG24 2NU

If you’d prefer to make a bank transfer, please contact us by email at info@societi.co.uk and we will send you our bank details.

If you’re planning a fundraiser, running a marathon or undertaking a sponsored activity, you might want to set up a Just Giving page. You can do that by clicking here.

How is Societi Foundation funded?

We currently receive no regular grants or have any major income streams – almost all the money we receive is from donations. We are enormously grateful for the brilliant hard work and amazing commitment of our fundraisers and family donors – thank you.

We have no paid staff and no paid Trustees – everyone supporting Societi Foundation is a volunteer. The charity Founder funded the charity in its entirety for the first year and a half and continues to meet any extra costs we might have – such is her commitment and determination to ensure we positively change peoples understanding of Kawasaki Disease, and improve support for children and families affected by the disease.

We are currently hosted by a business, and therefore do not have any office overhead costs – these are met for us by the business.

But our work to create influence, create change and raise awareness does cost some money – so all donations received are hugely appreciated.  We work very hard indeed to make the most of every donation we receive.

We have received a grant from KSSG, the parent support group, to help meet some of the costs of developing an online parent resource, and we received some funding towards some of the costs to develop a clinical learning module, to share knowledge across the medical community about Kawasaki Disease.