A Guide for Families and Carers
This guide has been written to provide information for families and carers, who have just been told their child has Kawasaki Disease. It’s been produced by Societi Foundation with clinical leadership from experts including Professor Robert Tulloh, Professor Paul Brogan, Dr Jethro Herberg and Dr Filip Kucera. Their contributions are gratefully acknowledged! We will periodically review this and if you’d like to make a donation to support our work, please click here.
A HUGE thank you to our wonderful families who helped develop and review this booklet, especially Sammi, Laura, Lisa, Joanna, Jess, Sue and Suzanna.
Introduction
Facing a diagnosis of Kawasaki Disease can be an extremely difficult and upsetting time for families. This guide is intended to help you understand more about Kawasaki Disease (pronounced “ka:wa‘sa:ki”), and provide some sources of information and support which are available for you.
It has been written by doctors, experts in Kawasaki Disease, together with parents who have been through Kawasaki Disease, and led by Societi Foundation, the UK Foundation for Kawasaki Disease. Kawasaki Disease mainly affects young children (under 5 years), but one quarter of patients are older. It is increasingly common in the UK with about 1,000 children admitted to hospital with Kawasaki Disease each year – and this number is rising.
Kawasaki Disease is an illness where there is inflammation of the blood vessels (arteries). This type of condition is called a vasculitis. Doctors still do not know what causes Kawasaki Disease – but we do know that it is not contagious (catching) to other children. Kawasaki Disease needs to be treated quickly to try and prevent long-term damage to the blood vessels, particularly those around the heart (the coronary arteries).
Helpful things to know…
- Early treatment of Kawasaki Disease reduces the risk of heart damage
- Most children recover well with rapid treatment
- Treatment works by ‘switching off’ inflammation
- Children with Kawasaki Disease are closely monitored
- Societi Foundation is here to help, with lots of information for families affected
