Kawasaki disease after Covid

Covid has seen the doubling of cases of Kawasaki disease, a rare childhood inflammatory illness that can cause heart failure if undiagnosed. What is it and how do parents cope with sudden health emergencies like KD?


Covid will have many long-term health impacts, some that we are not even aware of yet. Already two million people in the UK are estimated to be suffering from the effects of Long Covid. Research shows people who had severe illness with Covid may experience organ damage affecting the heart, kidneys, skin and brain as well as inflammation and problems with the immune system. And it isn’t clear how long these effects might last.

One rare inflammation-related illness which occurs in young children and has increased since the pandemic is Kawasaki disease. Previously little known, the number of cases of children being treated for KD has more than doubled since Covid. In 2020-2021, 706 children received treatment for Kawasaki disease, compared to a previous average of 336 children a year over the previous five years. There have also been reports of what has been called Multisystem Inflammatory Syndrome in Children caused by Covid and with symptoms that look a lot like Kawasaki disease.

Although the causes of KD aren’t clear, research suggests that both genetic and environmental factors, such as exposure to a virus, play a role.

What is Kawasaki disease?

Kawasaki disease was first described in the 1960s by Dr Tomisaku Kawasaki, a Japanese paediatrician. It mainly affects children under five and causes blood vessels throughout the body to become inflamed and can lead to the formation of coronary artery aneurysms in the heart. Without treatment coronary artery problems occur in up to 25% of patients and about 1% die. Symptoms include:

  • a fever
  • a rash
  • swollen glands in the neck
  • dry, red cracked lips
  • a swollen, bumpy, red tongue
  • red inside the mouth and at the back of the throat
  • swollen and red hands and feet
  • red eyes.

On diagnosis, children are treated with immunoglobulin, the medicine made from plasma. In January for Kawasaki disease Awareness Day a call went out for more plasma donors due to the increase in KD cases.

For parents KD can mean regular hospital visits if scarring has occurred due to a delay in diagnosis. Many report struggles to get a diagnosis due to lack of awareness of the illness by GPs.

Kawasaki Disease UK was set up by fashion designer Dee Izmail whose daughter Nadia was diagnosed with KD. Dee had to go through four visits to paediatricians before a nurse recognised the symptoms of KD having seen it in his home country, South Africa. A heart scan showed Nadia had developed two aneurysms which could have caused a cardiac arrest at any time.

She was treated with immunoglobulin for two years and aspirin for five years until the aneurysms went down. Nadia says: “If I had remained undiagnosed I would have had heart disease in adult life and limitations to the things I do each day.”

Kawasaki Disease UK’s website lists several children who have suffered long-term effects from the illness. They include Isaiah, who has multiple coronary aneurysms and underwent double bypass surgery at the age of four, and Pippa who, at nine weeks, was admitted to hospital with what her parents thought was a common childhood illness. Due to late diagnosis Pippa has two large aneurysms and her mum says she will now face a totally different lifestyle due to lifelong heart damage.

The problem of misinformation and ignorance about KD in the medical profession is illustrated by the case of a mum who contacted the charity after her son was diagnosed as having scarlet fever and discharged after five days in hospital once his acute symptoms had subsided. The GP told her he wouldn’t have recovered by himself if it was KD, but she questioned that view after finding information about KD on the Kawasaki Disease UK site and discovering her son had all the symptoms listed. She got in touch and was referred to KD expert Professor Michael Levin from Imperial College London who told her that KD can in fact resolve on its own. He recommended following up to make sure it was scarlet fever given similarities between KD and scarlet fever and advised getting an echocardiogram done.  The mum was later informed that her son had not in fact had scarlet fever, but her GP still insisted, incorrectly, that he would not have improved if he had had KD, saying the consultant had said the same thing.


While some employers are sympathetic about the various medical appointments involved in diagnosis and treatment, some are less so.  Workingmums.co.uk’s recent poll of parents shows a third of parents said their employer was not sympathetic about recent illnesses. When it comes to something as serious as KD this only increases the stress on parents.

Luisa*, for instance, took her son to hospital in November when his temperature wouldn’t come down and he had a reaction to his BCG scar a year after vaccination. Whilst waiting in A & E he developed a rash. The family were sent home after being told it was probably a viral infection, but were warned to look out for other KD symptoms. A few days later as Luisa’s son’s symptoms worsened the family were back in hospital where he was treated for KD. He was in hospital for five days and is having regular heart scans to check for scarring. He will continue to be monitored to ensure any heart disease is picked up and treated quickly.

Luisa was not paid for time spent in hospital because she was still in a probationary period. That meant the family lost hundreds of pounds at a time of rising costs and great personal stress. Luisa was then forced to hand in her notice as she is the only driver in the family and the family could not afford the cab fare to appointments.

“Financially, KD has ruined us,” she says. “We are so lucky our son received life-saving treatment during his hospital stay, but we were drowning in the lead-up to Christmas.”

Fortunately, Kawasaki Disease UK had an emergency Christmas fund and were able to give the family some money to tide them through the end of the year as their savings had been used up and they were unable to pay their bills.

But other families may not be as lucky so the charity is trying to raise awareness of the implications of KD for families and how important it is to act quickly to prevent scarring and the risk of heart failure later in life.

*not her real name. Picture credit: Wiki commons. The author is a Trustee of Kawasaki Disease UK.

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