She feels lucky her condition was picked up as sadly some people aren’t that lucky
Lucy was diagnosed with Kawasaki disease when she was a toddler
A Co Antrim woman has shared her story of living with a rare disease that affects around eight in every 100,000 children under the age of 5 in the UK
Kawasaki disease is a serious condition affecting Lucy McAleese, 22 and from Ballymena. It 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 Lucy’s case.
Lucy is sharing her story during Heart Month this February to highlight that heart illness isn’t something that only affects older people, which is a frequent misconception.
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She explained: “I have lived with Kawasaki disease since I was a toddler. 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.”
Recalling how her diagnosis was made, Lucy said: “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.”
Lucy is sharing her story during Heart Month
Lucy was then admitted back into Antrim Area Hospital where she 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.”
Lucy pictured around the time she was allowed to go back to nursery following her diagnosis
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.”
Lucy says her 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.
Lucy wants to dispel the frequent misconception that heart illness is something that mainly affects older people
“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 added: “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, March 22.
You can sign up to the Red Dress Fun Run at www.nichs.org.uk/RedDressFunRun.
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