{"id":411135,"date":"2026-02-06T12:28:17","date_gmt":"2026-02-06T12:28:17","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/411135\/"},"modified":"2026-02-06T12:28:17","modified_gmt":"2026-02-06T12:28:17","slug":"ive-lived-with-this-very-rare-disease-since-i-was-a-toddler-so-my-childhood-was-very-different","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/411135\/","title":{"rendered":"‘I’ve lived with this very rare disease since I was a toddler so my childhood was very different’"},"content":{"rendered":"

She feels lucky her condition was picked up as sadly some people aren\u2019t that lucky\"Lucy<\/p>\n

Lucy was diagnosed with Kawasaki disease when she was a toddler<\/p>\n

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<\/p>\n

Kawasaki disease is a serious condition affecting Lucy McAleese, 22 and from Ballymena<\/a>. 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.<\/p>\n

Lucy is sharing her story during Heart Month this February to highlight that heart illness isn\u2019t something that only affects older people, which is a frequent misconception.<\/p>\n

READ MORE: ‘I need a double lung transplant – not being able to breathe is the scariest thing in the world’<\/a>READ MORE: ‘Walking down the aisle after stroke at 30 left me in wheelchair was my best moment’<\/a><\/p>\n

She explained: \u201cI have lived with Kawasaki disease since I was a toddler. When I\u2019ve 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\u2019t that lucky.\u201d<\/p>\n

Recalling how her diagnosis was made, Lucy said: \u201cWhen I was about three years old, I started to get very unwell on a regular basis. My doctor couldn\u2019t diagnose what was wrong with me, but my mum kept taking me back as she knew something wasn\u2019t right.<\/p>\n

\u201cI was having symptoms including fever, \u2018strawberry tongue\u2019, 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.<\/p>\n

\u201cOne 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<\/a> Area Hospital. After lots of tests I was diagnosed with Kawasaki disease. I was then transferred to the Royal Victoria Hospital <\/a>in Belfast to have transfusions of IVIG.<\/p>\n

\u201cIVIG 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.\u201d<\/p>\n

\"Lucy<\/p>\n

Lucy is sharing her story during Heart Month<\/p>\n

Lucy was then admitted back into Antrim Area Hospital where she stayed for a number of months for treatment: \u201cI 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\u2019s blood thinning effect.<\/p>\n

\u201cI was only nursery age at the time, so this was obviously very scary, and I didn\u2019t 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\u2019t allowed to do lots of normal, everyday things.<\/p>\n

\u201cI have siblings and watching them do everything I couldn\u2019t 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.\u201d<\/p>\n

\u201cI think that\u2019s something people don\u2019t understand, it\u2019s not just the actual living with a condition that\u2019s difficult, it\u2019s all the other effects and feelings that come with it too. I\u2019m sharing my story because I think some things aren\u2019t spoken about enough and it\u2019s 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.\u201d<\/p>\n

\"Lucy<\/p>\n

Lucy pictured around the time she was allowed to go back to nursery following her diagnosis<\/p>\n

Unfortunately, Lucy\u2019s health <\/a>worries are not completely over now she is older as she explains; \u201cI 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.<\/p>\n

\u201cThe 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\u2019m dealing with and what the next steps look like.<\/p>\n

\u201cMy younger years were so affected by the Kawasaki disease, and I hope my future years won\u2019t be. There were so many normal things I couldn\u2019t 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\u2019s in Portrush and having to stand at the side and watch everyone else. All those small things stick with you.\u201d<\/p>\n

Lucy says her childhood was very different to most people\u2019s: \u201cAll those things you take for granted as a kid I couldn\u2019t do and that is sad. I\u2019ve always just lived with the way things are but it\u2019s when I see little children<\/a>, 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.<\/p>\n

\"Lucy<\/p>\n

Lucy wants to dispel the frequent misconception that heart illness is something that mainly affects older people<\/p>\n

\u201cI\u2019m only 22 and I\u2019ve already been through a lot in life. It\u2019s been hard and I’ve never actually really talked about it until now. When I signed up for NICHS\u2019s 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.<\/p>\n

\u201cParticularly 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\u2019t happy about, keep pushing. If my mum hadn\u2019t kept pushing we could have been looking at completely different circumstances today.\u201d<\/p>\n

Lucy added: \u201cI am not a runner, I will be walking the route, but that\u2019s part of the appeal of the Red Dress Fun Run, it\u2019s 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\u2019m really looking forward to being part of it.\u201d<\/p>\n

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\u2019s event which takes place at Stormont<\/a> Estate, Belfast, on Sunday, March 22.<\/p>\n

You can sign up to the Red Dress Fun Run at www.nichs.org.uk\/RedDressFunRun<\/a>.<\/p>\n

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