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Keisha's Kawasaki Disease Charity Zumbathon

Keisha Morgan is raising money for Societi, The UK Foundation for Kawasaki Disease
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Kawasaki Disease Charity Zumbathon · 14 July 2018

Kawasaki disease is the leading cause of acquired heart disease in children in the UK and the western world. It's time we changed that. We have an enormous task to do. But we are going to do it. TOGETHER we will. Join us and help us protect tiny hearts. You can make a difference. Awareness of this often pernicious disease is currently poor. Slow diagnosis and delayed treatment of Kawasaki Disease can cause serious, life-long health issues. Children affected by Kawasaki Disease have excellent chances of a good recovery with timely diagnosis and the correct treatment. At Societi we know that recognising Kawasaki Disease early is THE transformational opportunity to prevent what can be devastating effects from Kawasaki Disease. Kawasaki Disease has lots of symptoms in common with other childhood illnesses so it is often misdiagnosed - this means lifelong heart damage for too many children. Each year in the UK there are more cases of Kawasaki Disease than bacterial meningitis! Everyone would spot meningitis and know what to do, because of brilliant awareness raising work by MRT. We need everyone to recognise Kawasaki Disease too.

Story

Thank you for taking 5 minutes to read my story.

Kawasaki disease is a disease that causes swelling of the blood vessels all over the body including the heart. It presents with a high fever and rash.  It is the leading cause of acquired heart disease in UK children.

What causes Kawasaki disease?

Doctors do not yet know exactly what causes Kawasaki disease. It is probably due to a combination of factors.

Some children may be genetically predisposed to the condition, and environmental factors such as infections, and the way a child’s body responds to that infection, could play a part too.

Doctors do know that children under the age of five are most often affected, and it’s more common in boys than girls.

What are the signs and symptoms of Kawasaki disease?

The symptoms are suggestive of an infection but the fever tends to last for more than five days. It is not contagious.

Initial signs can include:

  • feeling unwell
  • fever (high temperature) over 38C
  • swollen lymph nodes (glands in the neck)
  • rash (especially on the chest)
  • palms of the hands and soles of the feet turn bright red, become puffy and the skin can peel
  • redness on the insides of the eyelids, lips tongue and inside the mouth.

For some children, the heart can be affected too. Around 28 per cent of children with Kawasaki disease develop problems in the blood vessels in the heart, which may lead to a bulge developing in the wall of a heart blood vessel (coronary aneurysm). This can lead to symptoms like breathlessness and chest pain.

How is Kawasaki disease normally diagnosed?

In most cases, doctors can diagnose Kawasaki disease through the distinctive symptoms.

Children usually need a number of tests to find out whether the condition is affecting other organs of the body, in particular the heart.

How is Kawasaki disease normally treated?

A child with Kawasaki disease is usually treated in hospital with high doses of a strong medication called immunoglobulin given directly into a vein through a drip.

If this is given early enough in the course of the disease, it can reduce the chance of future heart problems.

They are  also given aspirin, to be taken by mouth, which reduces the chance of blood clots developing.

This is our story:

In December 2017, I took my 4 year old daughter to the GP with a temperature of 105 degrees and a rash. They told us it was just a viral rash and sent us home. I took her back to the GP and A&E 3 times over the next 6 days. Each time we were sent away being told it was just viral. The fever continued throughout. Doctors told me to just continue giving her Calpol and Nurofen. Even though other symptoms had begun to appear - dry cracked lips, strawberry tongue, swollen lymph nodes.

On our 4th visit, I asked the A&E Doctor “Could this be Scarlet Fever? Can you do a blood test and throat swab?” He refused. He said “I know a viral rash when I see one”. I asked if it was normal for her lips to be so dry and cracked. He suggested she may be slightly dehydrated and said I should make sure she is drinking enough. He gave no explanation for her red swollen hands and feet. I left the hospital that night with the intention of bringing her back the following day for a second (or fifth ) opinion.

I brought her back to A&E on 23rd December 2017. I had to use my serious voice. “I am not leaving here until someone does a throat swab and a blood test and finds out what is wrong with my daughter” I said. The triage nurse told me to calm down. I suspected my little one might have Scarlet Fever after googling her rash, which was now big, red, raised blotches on yellow skin. Her eyes had become red. Her hands and feet were still red and swollen.

Luckily for us, the doctor on shift that night was kind and thorough. He listened. He did a throat swab, urine sample, blood tests and an ECG.

I was shocked when he came back in the room and said “Have you heard of Kawasaki Disease? We need to admit her and start Intravenous Immunoglobulin treatment immediately”

Further tests showed my 4 year old daughter had tested positive for Group A Streptococcus bacteria. She was fighting Strep Throat, Scarlet Fever and Kawasaki Disease.

We are forever grateful to that special doctor for his kind manner and willingness to listen to a concerned mummy that night. Thank you Dr Graham ❤️❤️❤️

My little one spent Christmas and New Year in hospital receiving treatment.   Although left with some complications from Kawasaki Disease, my daughter is making good progress under the care of Great Ormond Street Hospital and Royal Brompton Hospital.

We are very grateful for all the work Societi, the UK Foundation for Kawasaki Disease, are doing to bring about positive change for our children.  I want to support them by raising awareness and funds for much needed research into this increasingly common disease.

4 very important points about Kawasaki Disease (taken from a recent post on Societi's Facebook page)

1. It’s INCREASINGLY COMMON in the U.K. - research shows hospital admissions increased at least fourfold in England alone in the last decade. Yes, fourfold. FOURFOLD! It’s more common in the U.K. today than some forms of bacterial meningitis. Did you know that? Yet everyone would know meningitis wouldn’t they....
2. It is the LEADING cause of acquired heart disease in U.K. children - second to nothing
3. Globally it’s on the rise, cases doubling every ten years 
4. Perhaps up to 75% of U.K. cases are being undiagnosed or misdiagnosed - a figure suggested at the recent RCPCH conference - because clinicians are still reluctant to consider a Kawasaki Disease diagnosis - because of a FALSE presumption which prevails that doctors won’t see Kawasaki Disease.

So please donate if you can.  Even if you cannot attend my fundraising events.  Every little helps.  Every pound counts. Thank you so much for reading my story.  

Eternally grateful,

Keisha xx













Donation summary

Total
£677.00
+ £105.00 Gift Aid
Online
£677.00
Offline
£0.00

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