Have you heard of Kawasaki disease? The answer is probably not as this is a rare disease affecting around 8 in every 100,000 children under the age of 5 in the UK. It is a serious condition however which is why Lucy McAleese, 22 from Ballymena, is sharing her story of living with Kawasaki disease. Lucy has never spoken much about her condition but feels now is the right time to do so and to also take on local health charity Northern Ireland Chest Heart & Stroke’s (NICHS) Red Dress Fun Run.
Lucy explains; “I have lived with Kawasaki disease since I was a toddler. The disease causes swelling of the blood vessels throughout the body and can also affect the blood vessels supplying the heart muscle, increasing the risk of heart problems, which is true in my case. I am sharing my story during Heart Month (February), to highlight that heart illness isn’t something that only affects older people, which is a frequent misconception. When I’ve told people about my condition, they have been so shocked because of my age.”
“I want to raise awareness that there are lots of younger people living with a heart condition, and many who are undiagnosed. I am lucky my condition was picked up; sadly, some people aren’t that lucky. That is why I am doing the Red Dress Fun Run; to raise awareness and funds for Northern Ireland Chest Heart & Stroke. They do so much great work trying to make people aware of heart health, risk factors and symptoms that something might not be quite right.”
Recalling how her diagnosis was made Lucy says; “When I was about three years old, I started to get very unwell on a regular basis. My doctor couldn’t diagnose what was wrong with me, but my mum kept taking me back as she knew something wasn’t right. I was having symptoms including fever, ‘strawberry tongue’, and the skin on my lips and hands was peeling off. It was originally thought I could have scarlet fever as some of my symptoms were the same as those associated with that. But I continued to be unwell.”
“One day I was completely lethargic, and my mum rushed me to the doctor. He thought I was going into cardiac arrest, and I was taken to Antrim Area Hospital. After lots of tests I was diagnosed with Kawasaki disease. I was then transferred to the Royal Victoria Hospital in Belfast to have transfusions of IVIG. IVIG is intravenous immunoglobulin which is a solution of antibodies taken from healthy donors. My parents were told the next 24 to 48 hours were critical because blood wasn't getting to my heart.”
“I was then admitted back into Antrim Area Hospital where I stayed for a number of months for treatment. I was prescribed aspirin- Kawasaki disease treatment in one of the few occasions when aspirin may be recommended for a child. I also had to take other medication due to aspirin’s blood thinning effect.”
“I was only nursery age at the time, so this was obviously very scary, and I didn’t understand a lot of what was going on. Even when I got home it was hard because I was so restricted in what I was allowed to do in case I got hurt and started to bleed. I wasn’t allowed to do lots of normal, everyday things. I have siblings and watching them do everything I couldn’t was hard. Another example is when I was finally allowed back to school. My skin was very raw on my hands, and I had to wear white gloves to keep the necessary cream on and I was embarrassed and worried what people would think.”
“I think that’s something people don’t understand, it’s not just the actual living with a condition that’s difficult, it’s all the other effects and feelings that come with it too. I’m sharing my story because I think some things aren’t spoken about enough and it’s only through talking and hearing that people can be educated and know more about these sorts of things and understand what others might be going through.”
Unfortunately, Lucy’s health worries are not completely over now she is older as she explains; “I was stable for a number of years but I'm currently waiting on a cardiology appointment because I have an irregular heart rate. My heart rate goes sky high on a regular basis. I can lie in bed, and my heart rate is 140 beats a minute. The doctor doesn't know if this is because of the Kawasaki disease or the result of something else. I am on medication for this and it is of course worrying. The waiting is hard and I just want to know what I’m dealing with and what the next steps look like.”
“My younger years were so affected by the Kawasaki disease, and I hope my future years won’t be. There were so many normal things I couldn’t do- not being allowed to play outside, not being able to interact with many people at times because of the risk of germs and infections, having to stop going to clubs and hobbies, not being able to go on any of the rides at Barry’s in Portrush and having to stand at the side and watch everyone else. All those small things stick with you.”
“My childhood was very different to most people’s. All those things you take for granted as a kid I couldn’t do and that is sad. I’ve always just lived with the way things are but it’s when I see little children, of a similar age to what I was when I was diagnosed, that everything I went through at such a young age hits home. Now to have this irregular heart rate after doing well for a number of years feels like a bit of a double whammy.”
“I’m only 22 and I’ve already been through a lot in life. It’s been hard and I've never actually really talked about it until now. When I signed up for NICHS’s Red Dress Fun Run and found out more about all the great work they do around heart health I thought now is the time I have to talk about this and do my bit in spreading awareness too. Particularly about Kawasaki disease, so people hear about the condition and have an idea of the sorts of symptoms to look out for. I also want to encourage people, if there is something about their health they aren’t happy about, keep pushing. If my mum hadn’t kept pushing we could have been looking at completely different circumstances today.”
Lucy concludes; “I am not a runner, I will be walking the route, but that’s part of the appeal of the Red Dress Fun Run, it’s for everyone no matter your age, ability, fitness level and the atmosphere at previous years events looks brilliant. There will be so many people coming together to raise awareness and funds and I’m really looking forward to being part of it.”
Last year, the Red Dress Fun Run had over 700 people take part, and the charity is once again hoping for a sea of red participants at this year’s event which takes place at Stormont Estate, Belfast, on Sunday 22nd March. Leigh Osborne, Community and Events Fundraising Manager at the charity, is urging the public to sign up to the event saying; “We are so grateful to Lucy for sharing her story, raising awareness of heart conditions and for supporting the Red Dress Fun Run. Sadly, so many people are affected by heart illness in our local communities. Heart disease kills nearly twice as many women in Northern Ireland as cervix, uterus, ovary and breast cancer combined and coronary heart disease is the biggest single cause of premature deaths in people younger than 75 here. NICHS is here to help anyone affected by a cardiac condition with expert care and support.”
“So please come run, walk, dance, skip or wheel 5K with us at the Red Dress Fun Run. Together we can help rebuild thousands of lives and make a lasting change towards the health of people in Northern Ireland. Everyone is welcome to come along and join in the fun - even the family pooch!”
The 2026 event is being supported once again by the charity’s long term corporate partners, MACE and Musgrave MarketPlace. Diane Anthony from Musgrave says; “MACE and Musgrave MarketPlace are both backing NICHS’s call for people to dress up in red and take part in this year’s event, which is set to be fantastic. Whether you are taking part in memory of someone you have lost to a chest, heart or stroke disease, are celebrating someone who is living with such a condition, or want to help prevent these diseases affecting someone in the future – sign up and join us to support this worthy cause!”
You can sign up to the Red Dress Fun Run at www.nichs.org.uk/RedDressFunRun
