Patient Comments: Kawasaki Disease - Describe Your Experience

Question:

Did you or your child have Kawasaki disease? Please share your experience. Submit Your Comment

Comment from: RichieF556, 0-2 Male (Caregiver) Published: March 20

My son was diagnosed with Kawasaki's disease (KD) when he was 2.5 years old. We caught the disease early and he spent a week in the hospital and had an IVIG. He was doing fine until 2 months later he was having trouble walking again. The pediatricians couldn't figure out what it was for 3 weeks, until we finally got the terrible news that he had acute lymphocytic leukemia (ALL). I wonder if this could be linked to KD. I don’t know how it is possible to get both of these conditions!

Comment from: anonymously, 45-54 Female (Patient) Published: March 13

I got Kawasaki disease, at age of 23. I had red eyes that burned, my mouth was so red I couldn't eat or barely drink anything it hurt so badly. My hands and feet were bright red like a severe burn I had to crawl, which wasn't much easier. I couldn't turn the knob to turn on the water in the bath tub, I needed someone to turn it on/off and get it to the right temperature. After about 12 days my skin started peeling off my feet, hands and my mouth started to heal. I don't wish that on a toddler. I had no heart problems after it, I was grateful for that.

Comment from: bart2, 7-12 Male (Caregiver) Published: August 13

My son is now 40. He had the disease when he was 10 years old, and no doctors knew what it was. He was put in an empty ward all by himself because no one knew if he was contagious. It was very scary for him and us as his parents. All we were told at that time was he could have a heart attack. The only long-term effects he has (so far) are if he holds hands with anyone they will get clammy and his hands are still somewhat tender. Hopefully, that will be the only long-term effects.

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