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The Unprofessional Guide to Kabuki syndrome
Kabuki Syndrome: What You Need to Know, What to Expect, and How to Live Well - A Plain-Language Guide for Patients and Caregivers (For Informational Purposes Only)
by Alumigogo Books
Chapter 1: What Is Kabuki syndrome, Really?
Important notice: This guide is for general informational and educational purposes only. It does not constitute medical advice, diagnosis, or treatment. Always consult a qualified healthcare professional before making any medical decisions. Never disregard or delay seeking professional medical advice because of something you read in this guide.
Let's start with the most important thing: you just got handed a diagnosis you may have never heard of, and you're probably sitting somewhere right now feeling like you've been told your life - or someone you love's life - just changed forever. And it has, sort of. But maybe not in the way you're imagining. So take a breath. We're going to get through this together, one step at a time, in plain English.
First: The Name
Kabuki syndrome gets its name from the appearance of the face, which can look a bit like the makeup worn in traditional Japanese Kabuki theater. That's it - that's the only reason. It doesn't mean you or your loved one are an actor, or Japanese, or anything else except a person with a medical condition that has a slightly unusual name. The name was chosen in 1981 by Japanese researchers who noticed a pattern of facial features among their patients. It stuck. And no matter how you feel about that name, it's what we've got.
The name matters for one real reason: those facial features are sometimes the first clue that leads a doctor to suspect Kabuki