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Edited: Sep 17, 2024
Welcome to the Mito forum
Welcome to the Mito forum
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Hi there,
So lovely to see this website as a mom always trying to get more info about KSS. I have 12 year old twin girls with KSS, started seeing symptoms at age 7. My hardest thing is to explain to them that they need to conserve their energy (12 yr olds want to be on the go constantly with friends etc).. KSS has progressed quite quickly and my one daughter has already had a pacemaker surgery. They both seem 100% when they're doing well, but something will set them off and then it’s completely different. Their hooded eyes come and go, for months their eyes will be perfect and then all of a sudden be really hooded. The paralysis of the eye is getting worse but eyesight getting better.