Today, on World Heart Day, Societi, the UK Kawasaki Disease Foundation is campaigning to protect tiny hearts — by highlighting the urgent need for awareness of Kawasaki Disease – the leading cause of acquired heart disease in U.K. children.
Kawasaki Disease is little known, but very serious. In the UK & Ireland, research shows a shocking 39% of children under one year affected by Kawasaki Disease develop its most serious complications - coronary artery aneurysms. Up to 20% of all children affected develop this life-threatening complication and go on to need specialist care – for life.
Professor Paul Brogan, Pediatric Rheumatologist at Great Ormond Street Hospital said: “This serious disease presents a growing threat to children’s heart health. Doctors need to be alert to Kawasaki Disease and treat rapidly if it’s suspected.”
Societi Foundation research shows that about 1,000 children will be admitted to hospital this year in the UK with Kawasaki Disease. Once considered a rare disease, incidence is rising rapidly globally – Kawasaki Disease is now increasingly common. Low awareness however means delays in diagnosis and treatment and this delay significantly increases the risk of lifelong heart damage. Today, there’s a rapidly growing number of patients affected by Kawasaki Disease - living with a lifelong risk of further serious heart problems and needing specialist medication and care.
Natalie, mum to 2-year-old Leo, has had to watch her tiny son battle the most severe consequences of Kawasaki Disease after he became ill with Kawasaki Disease at just a few months old. Leo is in heart failure and now lives in hospital, awaiting a heart transplant, because of Kawasaki Disease.
Natalie is bravely sharing her story at this very difficult time for her family. She said: “I don’t want another child to go through what Leo is going through – it is torture watching your well child become so poorly with a disease that is so unknown but shouldn’t be. Kawasaki Disease is more common than bacterial meningitis and I want every parent, family member, carer and doctor to know about it. I don’t want another family to have to endure the pain of waiting for a heart transplant for their child.”
It is essential that childhood illnesses such as Kawasaki Disease are not missed. Early diagnosis and treatment can hugely improve outcomes for the vast majority of children. Doctors must expect to see it and be ready to treat it. Thousands of people live today with the all-too-often severe consequences of Kawasaki Disease. It is time this changed.”
Robert Tulloh, Professor, Bristol Heart Institute and Societi Foundation Trustee
Rachael McCormack, Founder of Societi Foundation said: “Catastrophic heart damage, like Leo’s, is the unacceptable risk every child affected by Kawasaki Disease faces right now, because this disease is so little known. We deeply admire Natalie and her family, who have worked tirelessly to raise awareness of Kawasaki Disease. This incredible family is simply determined to get this sinister disease is known. They’ve done this despite facing a such a terrible situation, to protect the tiny hearts of children who will be affected by Kawasaki Disease in the future.
“Awareness is absolutely key. Societi Foundation is campaigning to get Kawasaki Disease known, to protect tiny hearts and to stop children having to face a lifetime with heart damage.“