Sotos Syndrome: What You Need to Know

What is Sotos syndrome?

Sotos syndrome is a rare genetic disorder that affects development, growth and behavior. It also affects your child’s coordination, intellect and appearance.

What causes Sotos syndrome?

Sotos syndrome is caused by a mutation (change) in the NSD1 gene (piece of DNA). In a small number of cases, Sotos syndrome is caused by a chromosome deletion. In most cases, the change happens at random. Sotos syndrome is not caused by anything you or your partner did.

Rev. 6/2018. This handout is intended to provide health information so that you can be better informed. It is not a substitute for medical advice and should not be used to treatment of any medical conditions.