40 years post KD

Personal stories of individuals and families affected by Kawasaki disease
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40 years post KD

Post by Jim_Carlson » Thu Mar 08, 2018 5:23 pm

My name is Jim Carlson. When I was 4 years old I contracted KD. That was 1976. No one knew what I had and at that time and there were only a handful of confirmed cases of KD within the continental U.S. I almost died. I have very few memories of that time but I suspect KD has haunted me my entire life.

I was always sick as a child. Like many others on this forum my skin pealed and I was constantly sick, and in and out of hospitals for a few years following my KD diagnosis. I was an extremely skinny kid even though I was very active in sports. I played virtually every sport under the sun, even though I was never very good at any of them. I ate healthy and had caring dutiful parents that provided me every opportunity. It is safe to say that, compared to my peers, I was behind the curve at virtually every activity in my youth. I cannot say for certain but I suspect part of these problems were the result of KD.

I have struggled academically. I was a terrible student when I was a child. I had to work so much harder at school to keep up with the other kids. I have not heard other KD survivors mention ADD type symptoms and I am curious if I am alone in this regard. It is possible that these problems have nothing to do with KD but I strongly suspect it did. My parents say they noticed a physical transformation in me from before KD to after KD. Before I was a larger child and after KD I was a skinny child of average height. I am much shorter than most of my cousins and siblings. I am 5'11" and 175 lbs., and most of my other siblings are 6'1" to 6'5" and 200-250 lbs. I never developed upper body muscles even though I exercise and stay in fairly decent shape.

I have mild arthritis and this has been a problem my entire life. I thought it would get worse as I aged but surprisingly it has not. I suspect it has not gotten worse, in part, because I stay active and in good health.

I had an ultrasound completed of my heart at 40 years old to see if there was any sign of damage. Everything looked normal but I would like advice on the best preventive medical screening KD patients should receive. I have a young daughter and I need to stay healthy for her. I do not believe I have any heart damage but I like to do lots of backcountry skiing and mountaineering and I always worry that intense exercise could be unwise for someone who had KD.

In closing, my ADD symptoms have been the most debilitating. I completed a BS in biology and a MS in ecology but I have had to work so much harder than my peers to achieve modest professional success. So often I have wanted to give up, crawl down a hole and never come out. Has any other parents or patients noticed ADD symptoms following KD and if so, do any of you have interventions that have helped you cope with the lingering effects.


Jim Carlson

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