Q & A
Below are questions we are frequently asked – and we hope you find the answers helpful. If you’re familiar with the Societi Family Resource Portal you may have seen these questions on the Q&A page there too.
We want to grow this list of useful questions and answers. If you have a question which you think others would be interested in too, and which you’d like us to put to our Societi Professors – the leading expert in Kawasaki Disease in the UK, please contact us via the link below. Please put “Question for Societi Professors” as the subject and we’ll forward questions on, periodically updating this page with new questions and answers.
Ask Societi Professors a questions through our Contact Us page.
If you have an ANY MEDICAL QUERIES – get in touch with your usual doctor or GP. We CANNOT and WILL NOT respond to these.
Click on a question to see the answer.
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. This fever often appear with two or more of the following symptoms. 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 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 and the results of specific blood tests.
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. There are an estimated 20,000 people – children, young people and adults in the UK today who have had Kawasaki Disease. In the ten years to 2015, our own research showed a FOURFOLD increase in hospital admissions for Kawasaki Disease in England.
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 also 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 hospital admissions in England increasing fourfold in the decade to 2015 – 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?
Hundreds of children every year in the UK are diagnosed with Kawasaki Disease. 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 perhaps treatment is even 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 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?
About a thousand children a year are admitted to hospital with Kawasaki Disease in the UK. Increasingly common, Kawasaki Disease is affecting ever more children and young people in the UK each year. Research by Societi (2019) shows hospital admissions for Kawasaki Disease have increased three to 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 following symptoms – rash, bloodshot eyes, cracked lips/strawberry tongue, swollen fingers/toes, swollen glands – 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.
My child has been diagnosed with Kawasaki Disease — very late — and I’ve been told by our doctor that they will not now give IVIG as treatment. Why is this?
IVIG (intravenous immunoglobulin) is one of the treatments given in Kawasaki Disease to “dampen down” the inflammatory processes which occur in the first few days of the illness (the acute phase). One key aim in treating with IVIG as early as possible is to reduce the risk of coronary artery aneurysms developing, and to help prevent damage to the heart. Without treatment, inflammation from Kawasaki Disease might otherwise continue, possibly doing further damage to the heart in some children, until it eventually resolves. When a child is diagnosed late, doctors should still consider treatment with IVIG if there are signs of ongoing acute inflammation – as suggested by a persistent fever and a continued significantly raised CRP. CRP is C-reactive protein, measured by a blood test, and this will stay raised if the acute disease action is still ongoing.
In practice, IVIG is rarely administered beyond 15 days after a child’s fever first began, because the fever and other inflammatory processes will have usually resolved – though, too often, this may have caused significant heart damage in the process. That’s why early treatment with IVIG, is critical for Kawasaki Disease within the first few days of the illness, to reduce the risk of heart damage.
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 is intravenous immunoglobulin (IVIG) and aspirin – often also with corticosteroids, with the aim of reducing fever and preventing heart damage including coronary artery aneurysms (serious damage to the heart). Sometimes other drugs are used as well, in support of these three main treatment approaches.
Early treatment is key to reduce the risk of heart damage. We work to raise awareness of this so that children can get the early treatment they need.
You don't ever (well hardly ever!) abbreviate Kawasaki Disease to KD - why?
When starting out, one of the first things Rachael (our Founder) did was take advice on what the barriers were to getting information “out there” and into the public domain. She asked for advice because she realised there must be a reason this serious disease wasn’t well known! 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 has been difficult to get information about.
They advised that by using the abbreviation “KD” you add a further barrier and do nothing to raise awareness! After all, only people already affected by Kawasaki Disease would know what the abbreviation “KD” means. So – 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! We always say it in full – because we want to get Kawasaki Disease known!
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 everyone. 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 society. It’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?
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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 Trustees – and we are lucky to be supported by many active volunteers. 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.
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 received a grant from KSSG, the parent support group, to help meet some of the costs of developing our 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.