Neeta Patel talks us through why she’s raising awareness of Kawasaki Disease.
“I started to get the gut feeling something was seriously wrong”
June the 26th was the day my healthy and active eight year old son first got a high fever which I thought was the start of a normal virus. After day three, a rash appeared and like many parents would I thought meningitis and did the glass test. However, the rash faded. Although I breathed a sigh of relief, I also started to get the gut feeling that something was seriously wrong. After five medical assessments, either at the GP or at our local hospital, we kept being told my son had a viral infection and was prescribed antibiotics.
Neeyan was getting worse and my world turned upside down when he was rushed in to emergency with a heart rate of 230 and an open diagnosis. Then I heard the words "Kawasaki disease" for the first time, completely unprepared for what was about to happen. With Kawasaki disease there are no blood tests and a clinical diagnosis was made based on the symptoms which were high fever, rash, lethargic, arthritis (Neeyan couldn't even walk), swollen glands and extreme irritability plus so many more. The main priority was to reduce his fever and save his heart from damage. I was happy that a treatment plan was in place and I trusted my gut and we had a diagnosis within the 10 day window.
We were on the road to recovery, right? No! Neeyan became resistant to two doses of IVIG and needed more aggressive treatment. They couldn't control the inflammation as this disease managed to ravage its way through Neeyan body and damaged his heart. To be told I have no choice but to change the treatment plan was pretty tough to deal with. How could I not have a choice when I live by my choices in work and at home every single day? But I had to trust the medical team to save Neeyan's heart from any further damage.
Finally the inflammation reduced but we hadn’t managed to stop the damage to Neeyan’s heart. His coronary arteries had dilated to 4mm at the time and currently has to take Asprin every day to prevent his blood from clotting along with regular echos on his heart as follow up. Neeyan will be under long term surveillance for life now to keep an eye on his heart.
I’m now on a mission to raise as much awareness as I can to save another child’s heart from being damaged. Kawasaki disease is not rare and the numbers are increasing year on year here in the UK, however awareness is still really low despite it being the number one cause to acquired heart disease in the UK. How? My awareness campaign will never stop as I just can’t until we know what causes Kawasaki disease. My hope is that once they find the cause they will also find the cure.
Societi (The Kawasaki Disease Foundation) and KSSG (Kawasaki Support Group UK) are both volunteer funded and are also fighting for more awareness of Kawasaki disease, along with UK protocols to reduce misdiagnosis. We want all parents and the medical professionals knowing the symptoms and thinking of Kawasaki disease.
Sky has done so much to help me with this. From launching an awareness day at Sky Central to CSG teams coming together to #showusyourheart on world heart day. I also held a special screening recently for seven families who have been impacted by Kawasaki disease and were very lucky to have a tour of the sky sports studios and we even managed to get Natalie Sawyer and Jullian Waters to show us their hearts.
Today is international Kawasaki awareness day and it would be great if you could share the symptoms with just 10 people and have that Kawasaki conversation to help spread the awareness. There are plenty of other ways you can support, just visit http://www.societi.org.uk/ where you’ll also find lots of downloadable information.