About us

Support this worthwhile cause that aims to increase awareness in medical professionals and parents of the threat posed to babies, children and young adults by Kawasaki Disease (KD).

KD tends to mostly strike children under the age of 5, initially manifesting itself with at least four of six symptoms normally associated with an infection and in many cases. KD can mutate into life-threatening and very often undiagnosed heart disease (usually in the form of aneurysms caused by build up of inflammation to the coronary arteries of the heart).

KD is now known to be the leading cause of coronary heart disease in children that affects adult life. It is also suspected to be the primary source of death by unexplained heart failure in children and young adults.
KD cases are on an increase and is now known to be partly hereditary which poses a 10% chance of being passed onto offspring.

Our mission is to save lives by promoting awareness of the classic symptoms and establish diagnosis within 4 days of the onset of the condition.


Dee Izmail chair woman and mother of KD victim Nadia


Nadia’s Story

I was one of the children

To have been misdiagnosed before damage to my coronary arteries took place due to KD. Infants like me who develop KD at an age younger than 1 are usually the most seriously ill and at greatest risk of long-term heart problems. I was only seven months old. My condition was escalating at speed, and my parents were told that I had a common flu virus which could be cleared with antibiotics. My parents realised something was wrong when no recovery became evident. On our fourth visit to the paediatricians, it was then that a South African nurse happened to recognise the classic symptoms of KD having seen it in his home country. I was treated with immunoglobulin also called gamma globulin, a blood product containing antibodies, along with aspirin for two years.

If I remained undiagnosed I would have had heart disease in adult life and limitations to the things I do each day. The cause remains unknown. Researchers believe the disease may be an immune response to an acute infectious illness based in part on genetic susceptibilities. My aim is to continue to help promote awareness with my Mum and raise funds that will aid KD research.

What is Kawasaki Disease?

Kawasaki Disease is also called Kawasaki Syndrome or mucocutaneous lymph node syndrome. The illness was first described in Japan by Dr Kawasaki in 1967. It is an illness mainly affecting children under five. It is characterised by inflammation of the blood vessels (‘vasculitis’) and in particular damages the coronary arteries that supply blood to the heart. About 1/3 of untreated children with KD suffer heart damage, making it the most common cause of heart disease acquired in childhood in many countries, including the UK. 

The cause of KD remains unknown, but is believed to be due to an infection that all children get in early childhood and to which a minority of children react abnormally. There is good evidence to suggest that these children have an inherited predisposition to KD (and also to developing heart damage once they have KD). Projects therefore investigate the genes controlling the immune system that may be important in determining susceptibility and heart damage. This will tell us not only about the cause of KD, but may also help understand the basis of ischaemic heart disease in adults (heart attacks, angina etc).

KD is a model in which to study the role of infection in damaging blood vessels and developing atherosclerosis. Kawasaki Disease appears to run a triphasic course. The first phase is seen during the first 8-12 days and the child exhibits a fever with mouth and skin changes. The child appears acutely ill and may at this stage show signs of aseptic meningitis, loose stools and jaundice. Towards the end of this phase the child may show great improvement and existing symptoms may resolve. The sub-acute phase two occurs 6-10 weeks after onset of fever. This is characterised by peeling skin at the the hands and feet, mood changes, loss of appetite and possible cardiac and joint involvement. For children to be diagnosed as having the disease, other disorders that might mimic the condition must be excluded. 

If your child has the following symptoms for more than 4 days ask the doctor for a heart scan by a Pediatrician:

5/6 criteria must be satisfied :

5/6 criteria must be satisfied:

  • A high fever for more than 4 days

  • Red bloodshot eyes

  • Red cracked lips and strawberry tongue

  • Peeling feet and hands (two or three months after onset).

  • An Angry Rash

  • Swollen lymph nodes in the neck

Latest Research

Watch this space for key updates and publications: -

  • Technology and Tools We saw this and hope more doctors will make use of technology and tools like VisualDx so fewer cases of KD go misdiagnosed. This shows how difficult it can be for doctors to diagnose. “It’s one of those conditions where, if you’re not thinking of it, you’ll miss it. Doctors will say, ‘It’s a virus. It’ll pass’, but it’s one of the few conditions where kids can die of a major heart attack”.

    More Support

    UK Support Group: www.kssg.org.uk
    Helpline Email: helpline@kssg.org.uk
    National Help Line: 02476 612178

Our Sponsors


Support Us in Our Mission to Save Lives of Children with Misdiagnosed Heart Disease

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Our work helps to sustain our awareness of a little known, complex heart disease which begins disguised as a general infection, and is the leading cause of coronary heart disease in children and to prevent complications in adult life. We also aim to gain sponsors and build resources for research in the near future. Many children are still being misdiagnosed and suffer due to lack of medical knowledge. Together we can save more hearts!

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The Disease

Spot The Symptoms of Childhood Heart Disease

If your child has the following symptoms for more than 4 days ask the doctor for a heart scan by a Pediatrician

  • A High Fever

  • Red Bloodshot eyes

  • An Angry Rash

  • Red Cracked lips and strawberry tongue

  • Swollen lymph nodes in the neck

  • Peeling feet and hands

Kawasaki Disease
Kawasaki is a rare vasculitis that strikes children.
What causes Kawasaki disease?
There is no known cause of Kawasaki, but it is not contagious.

Who gets Kawasaki disease?
Children under the age of 11. 80% of patients are under the age of 5.

Patients usually begin with a high fever lasting at least five days. Symptoms may include red eyes, lips, and mouth; rash; swollen and red hands and feet; and swollen lymph nodes. The disorder affects the mucus membranes, lymph nodes, walls of the blood vessels, and the heart. The most important aspect of the disease is how it effects the heart. The disease can cause inflammation of blood vessels in the coronary arteries, which can lead to aneurysms. Kawasaki is the leading cause of acquired heart disease in children.

How is Kawasaki disease diagnosed?
Diagnosis is usually based on evaluation of classic symptoms. Possible diagnostic tests include blood studies (complete blood count and blood sedimentation rate), electrocardiogram, echocardiogram, chest x-ray and urinalysis.

What is the prognosis?
With early recognition and treatment, full recovery can be expected. However, 2% of patients die from complications of coronary blood vessel inflammation. Patients who have had Kawasaki should have an echocardiogram every 1-2 years to screen for heart problems.

Immediate treatment is critical to avoid permanent damage to the coronary arteries and heart. Standard treatment includes high doses of Intravenous gamma globulin. The patient’s condition usually greatly improves within 24 hours of treatment.
Radiography (x-ray) of the chest may be used to look for changes in the aorta. Angiography or arteriography is used to help determine the location and appearance of vessels affected by the disease.

Source: http://www.vasculitisfoundation.org/education/forms/kawasaki-disease/

News Update: Nadia

Above: Kawasaki survivor Nadia taking part in KD research at Imperial College London, previously held at Great Ormond Street Hospital where she was diagnosed.

Above: Kawasaki survivor Nadia taking part in KD research at Imperial College London, previously held at Great Ormond Street Hospital where she was diagnosed.

Isaiah’s Journey

Above: Isaiah fighting KD  Please like and share this  facebook page , another KD fighter as explained by parent

Above: Isaiah fighting KD

Please like and share this facebook page, another KD fighter as explained by parent