I was one of the lucky ones... or so I thought.

Personal stories of individuals and families affected by Kawasaki disease
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kirstynnnx
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Posts: 1
Joined: Fri Oct 17, 2014 6:14 am
Location: Glasgow, Scotland

I was one of the lucky ones... or so I thought.

Post by kirstynnnx » Fri Oct 17, 2014 7:26 am

Okay so I had Kawasaki Disease when I was 6 and until then I had been a perfectly healthy and happy child.

Initially I had a very high fever which the doctors thought was a virus and I was then given penicillin... this was when the other symptoms started to show. My whole body was covered in a rash and my skin began to peel, the only was I can describe it was like snake skin. The skin on my fingers and toes was coming off in such a manner that it was retaining its shape... I could barely put weight on my feet as they were swollen and it was extremely uncomfortable. The rash and peeling was everywhere, My eyes were irritated and red, my lips were severely cracking and the inside of my mouth was covered in red blotches and I had the expected "strawberry tongue". My nails were showing deep grooves and became weak. My Muscles and joints were tight and uncomfortable

No doctor where I live was able to diagnose this and kept putting it down to various other causes such as an allergy to the Penicillin I had been given. Eventually my mum pushed for me to be seen at Yorkhill Childrens Hospital where everything from my skin to my heart was examined, unfortunately due to the rarity in Scotland this did not help and I was still not diagnosed. They tried various treatments and eventually the symptoms began to ease on their own. It was only after this point a doctor who Had seen this before in London was able to give my family some confirmation as to what had caused this and he was extremely surprised that it was healing itself, I was told I was a fighter. I was never given IVIG or treated for the illness in any way and within a few months I was fully recovered. My heart was monitored regularly for a while but eventually this was stopped as the doctors saw no reason for it to be continued.

Two years down the line I became ill again with sickness issues, what could only be described by my doctor as something which resembled morning sickness. I was referred to our local hospital for testing and they blamed it on everything from hormones to allergies. The sickness came in phases. I would be ill for a few months then everything would settle down. For years they tried to figure out what was causing it and many doctors simply told my mum "Dont worry, she'll grow out of it". But I didnt, Over the years this has progressed and now at 24 I am ill almost every day and it is no longer just in the mornings, although I have learned to control this to an extent which means I am now rarely sick so long as when I feel it coming on I rest. They have never found the cause and the only thing my doctors can now link this to is the damage left from the untreated Kawasaki.

Unfortunately this is not the only side effect I have been left with and I am aware that many of the symptoms I now deal with are common; however, my doctor feels that if my symptoms had been correctly recognised and treated I would not have been left with so many.

My hands continue to peel to this day when I am too warm or ill and occasionally I get a red spotty rash on my hands at the same time which feels irritated and uncomfortable.

I have a sever issue concentrating and remembering simple information short term. In school this caused issued however my teachers found a way around this and encouraged me to use activities to help retain information. For me the most helpful was drawing, I did this even while teachers were giving lectures as it stopped me zoning out. They have eventually realised that this is linked to Absence Epilepsy and when I zone out I do not remember anything from those moments. Luckily my friends find this hilarious and it tends to cause a laugh once I come back out of it.

Generally I am extremely hyperactive and cant be stuck doing one thing for too long otherwise I get bored. I also have OCD which affects me every day.

Although I am hyperactive I become tried easily especially during activity and in school this meant I was only able to take part in physical exercise for so long, there were certain sports I could not take part in and if I were to try and running activities I would end up coughing up blood. Along with this I now have issued with my heart when even walking too far as I become extremely warm and generally feel like I might pass out. During this my heart is generally racing so fast I can barely notice a gap between beats.

A few years ago I was diagnosed with Vasovagal Syncope which luckily we don't think is linked to KD however they have said there might be a link between this and my cardiac issues when being active/walking as this seems to trigger it. For anyone who doesn't know what this is basically my blood pressure does not control itself. We tried many different treatments for this until they realised I have one of the rarest forms meaning it is linked to my blood sugars. When my blood sugars become too low my blood pressure drops causing me to black out, usually for around 5 minutes. I need to be careful when going anywhere alone and generally have to let people know when I leave one place and arrive at the next.

My immune system is poor and I have had a constant cold most of my life since, which does not help since my nose was broken when I was 8 and I now have a deviated septum. Breathing can be difficult at times and it means again I become tired more easily.

I get tightness and pain in my muscles and especially my joints, most of which crack and pop on a daily basis. I have problems with pain in my feet however this is only bad on occasion and most of the time I am barely aware of it.

I find it very difficult to fall asleep at night but once I am asleep I have issues waking up, If I am woken to quickly this also can trigger my acid reflux so I tend to have to set my alarms 1 1/2 hours before I have to get up to allow my body time to settle and ensure I am not ill for the rest of the day.

The muscle at the back of my left eye is damaged and I am physically unable to cross my eyes. This might seem small but my doctors had never seen this before in a child of that age and again the only reason they can think of is the damage caused to my eyes due to lack of treatment. Apart from that my eyesight is fairly normal however if I am looking at something detailed for too long or watching something off to my left this causes my eyes to unfocus themselves and I end up with a migrane.

I have had issues with Anemia on and off since I was 7 and I have been on Iron tablets at least 4 times in my life to correct this however it never lasts long.

Growing up with all these issues has resulted in a deep set anxiety issue which we struggle to control. Personally I don't think this was helped by the fact I was so restricted growing up and there were so many things I was unable to do. I also developed issues with frustration and irritability. I can become irritated or angry quite easily and because of the smallest things and when this happens I have quite a temper which luckily I have some control over, to a point. I can throw things ( I have broken at least 2 phones), slam doors, refuse to leave my room in an attempt to calm myself down and generally refuse to listen to what anyone says. This has caused problems at home, mostly arguments with my mum who I spend a lot of time with an she generally gets the brunt of it and is quite often also the cause as we are too similar. When it gets too far I can become easily upset and the smallest things such as not being able to fold a piece of paper properly frustrate me and leave me in tears. This is also triggered by someones tone when they speak to me and it is often not meant but I become rather upset.

Luckily as I have grown up I have been able to learn my own personal ways of controlling these effects or at least dealing with them. When I turned 18 I was strong enough to be able to go out like a normal teenager as long as I had someone with me who was aware of my problems. By the time I was 21 I had them under enough control that I could begin to lead a somewhat normal life. At 22 I went to my first ever festival along with one of my best friends however I had to have a medical note on me at all times just to be safe. Now at 24 I try my hardest to live my life as normally as possible. I go out with my friends, party and drink (to a limit as it has triggered things in the past), travel, go camping, work a full time job with a freelance job on the side, enjoy family time with the children who understand their auntie cant always play with them fully and know not to steal me sweeties :)

This is a condition that is not always well known and I think more doctors and medical professionals need to be educated in as it can be extremely dangerous and parents of children with KD need to be made aware that there could be possible side effects that will continue once a child has recovered as this could prevent parents panicking like mine did when I started showing these signs a year or two after recovery. Also many doctors feel it is unnecessary to continue to monitor patients hearts afterwards which I feel needs to be looked into as I am aware of a large number of people who have developed heart issues many years down the line, even into their 30's and 40's.

I hope no one has had this many problems after their recovery and I highly sympathise with those who have been left with after effects, it is not pleasant and it needs to be looked into further.

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