40 years post KD

Personal stories of individuals and families affected by Kawasaki disease
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Jim_Carlson
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Joined: Thu Mar 08, 2018 4:50 pm

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.

Sincerely,

Jim Carlson

sumikhan
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Joined: Sun Mar 25, 2018 3:26 am

Re: 40 years post KD

Post by sumikhan » Sun Mar 25, 2018 3:35 am

Hello everyone,

My sister was diagnosed with KD when she was 1.5 years old and now she is 22 years old. everything was fine. my dad forced her to go through routine heart checkup out of the blue and now doctors doubt for coronary anuerysm of size 8mm. we are very stressed actually Im shocked. the doctors always used to assure us that she will live a normal life. We will be getting a CT angiogram done on this Thursday, Has anyone encountered similar situation?

Sarno98
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Joined: Wed Mar 28, 2018 9:51 am

Re: 40 years post KD

Post by Sarno98 » Thu Mar 29, 2018 10:31 am

Good Day,

I am new to this forum and thought I would just put this out there to see if anyone could help me figure out what has baffled the doctors I’ve seen. I am a petite 56 year young, very fit and active women. I have always eaten a very healthy diet. I was a very sickly child/young adult with many bouts of streptococcus, tonsillitis, pneumonia, hypoglycemia, mono and scarlet fever.
Always treated with rounds of antibiotics.

My sister pointed me to the KD forum with the thought that I may of had a undiagnosed case of KD. She has a child with a confirmed diagnosis of KD. He was treated and is a healthy 24 year old.

I’ve been suffering from arthritis throughout my body since i was a teenager. My rheumatologist has run many test over the years. These test have confirmed that I have some sort of autoimmune problem. I believe my activities and anti inflammatories are keeping me from locking up completely.

My heart is now causing me issues. Since I was in my early 20s I’ve had spells of fainting. This has started to become more frequent and I’ve black out ended up in the hospital recently. My blood pressure is all over from extremely low to high.

A minor procedure for Carpal Tunnel on both my wrists sent me in for an EKG. The EKG showed that I have low voltage and sinus bradycardia. After that I had a heart ultra sound that showed I have a slight murmur and some regurgitation. I am now on a 30 day Mobil cardiac monitor to track my heart during regular activity. (Not very comfortable for an active person)

So I guess I’m looking for some information to present to my Doctors that may help them. I feel that they will think I’m crazy if I bring up the fact that I believe I could of had KD as a child. Looking at all the symptoms of KD I did have all the signs except for a few. 1. I’m a girl 2. I don’t remember if I had red eyes 3. I was around 6 or 7 years old 4. I’m not Asian.

Any thoughts would be appreciated and Thank you in advance for your time if you choose to reply.

Best Regards to the KD Community
Susan

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