Q & A

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What is Kawasaki Disease?

Kawasaki Disease is a type of inflammation. It mainly affects young children but it can affect people of any age.  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 (incomplete Kawasaki Disease) or all (complete Kawasaki Disease) of these symptoms. If a child has a persistent fever with any of these symptoms, please THINK Kawasaki Disease.

Most of these symptoms occur in the first few days of the illness, although they are often not all  present at the same time. There are also other typical features we see which are those of irritability (children with Kawasaki Disease are characteristically irritable!) loss of appetite, moodiness, diarrhoea, tummy ache, vomiting and jaundice.

Many parents find it difficult that there is no diagnostic test for Kawasaki Disease. In the future it is likely that there will be a test to aid diagnosis but currently, the diagnosis is based on presence of the above symptoms.

Kawasaki Disease - 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.

What causes Kawasaki Disease?

There are lots of theories around the cause of Kawasaki Disease and much research ongoing across the globe to try and identify its cause. But at the moment, no-one is certain of the cause.

There is some evidence to suggest that some children have a genetic predisposition to being affected by Kawasaki Disease.  Some researchers believe it could be a child’s response to an infection or a number of infections though no infectious cause has been found.   There are theories too that suggest an environmental agent – perhaps something which is airborne or related to water bodies.  Whilst there is much research ongoing, some of it appears contradictory – and the patterns of incidence of Kawasaki Disease (who gets it and where) are different in different places.

What we do know is that Kawasaki Disease is on the rise – with cases increasing fourfold in the UK in the last decade – and identifying the cause will be a major milestone in the fight against 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.

What other diseases might doctors consider before making a diagnosis of Kawasaki Disease?

Kawasaki Disease is often diagnosed late in the UK at the moment – this is something we are working to change! Sometimes this is because doctors decide that the symptoms are those of a common virus – or other common childhood illness.  Sometimes a child who is poorly with Kawasaki Disease is first diagnosed with something else – and sometimes treatment is given for another illness; only for a Kawasaki Disease diagnosis to be later confirmed.  Some of the diagnoses which typically are confused with Kawasaki Disease include:

Streptococcal infection – the presence of a Streptococcal infection does not (as previously thought) preclude a Kawasaki Disease diagnosis – in other words the two illnesses can appear together.

Epstein Barr virus – sometimes called the kissing disease and is one of the most common viruses in humans

Staphylococcal infection – Staphylococcal bacteria can cause a wide range of infections

Measles – a very infections childhood illness, cases of measles are much more rare than Kawasaki Disease typically in the UK, because of vaccination programmes

Rubella –  also known as German measles or three-day measles, is an infection caused by the rubella virus

Systemic juvenile idiopathic arthritis – this is a childhood condition which affects a child’s joints

Some types of meningitis –  Meningitis symptoms vary, depending on a persons age. Usually, the first symptoms can come on quickly or start several days after someone has had a cold, diarrhea, vomiting, or other signs of an infection. Common symptoms include fever, lack of energy, irritability, headache, sensitivity to light, stiff neck and skin rashes

Slapped cheek – Some people with this illness won’t notice any early symptoms, but most people will experience a few days being unwell with symptoms such as a slightly high temperature of around 38C, a runny nose, sore throat, upset stomach, headache and generally feeling  unwell.

Scarlet fever – this can occur as a result of a group A Streptococcus infection. The signs and symptoms include a sore throat, fever, headaches, swollen lymph nodes, and a characteristic rash


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 in England.  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.  If you’d like to help raise awareness, you can get started by downloading an information pack here – Your Kawasaki Conversation.

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 for a second time.  Unlike other illnesses – for some of which children develop immunity or resistance to developing it again (like chicken pox for example), there is no natural resistance built up from a first Kawasaki Disease illness.

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 including coronary artery aneurysms.  Sometimes other drugs are used as well, in support of these three main treatment approaches.

You don't ever (well hardly ever!) abbreviate Kawasaki Disease to KD - why?

When starting out, one of the first things Rachael did was take advice on what the barriers were to getting information “out there” and into the public domain.  A brilliant team of communications advisors who helped her said that using “KD” was an obvious and quite significant barrier to people understanding what is already a little known disease and one it is difficult to get information about.  By abbreviating it to “KD” you add a further barrier and do nothing to raise awareness – only by saying Kawasaki Disease (in full) can we contribute to awareness raising – and allow people who don’t know the disease to find out more.  So that’s why you’ll never (hardy ever!) see Societi abbreviate Kawasaki Disease!

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!

Why "Societi" - where did the name come from?

Well, it’s not so mysterious…. but it is something we do get asked. So here’s where it came from!  When thinking about starting our charity, our Founder Rachael, was motivated to create Societi because she believed (and still does!) that Kawasaki Disease should be known by every one.  It is the leading cause of acquired heart disease in our children, the most vulnerable in our society; and she feels that if we consider ourselves to be a civil society, Kawasaki Disease should be important to everyone and must be a disease that that is known by – and a matter of concern to – everyone in our society. Hence the name “Societi” – for all our societyIt’s our aim to get Kawasaki Disease known by everyone!   Societi is pronounced just like the word society, and spelt with and ‘i’ instead of a ‘y’.  Our full name as a registered charity is Societi Foundation and we are the UK Foundation for Kawasaki Disease.

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.