Free Sample
The Unprofessional Guide to DICER1 syndrome
What You Need to Know — For Informational Purposes Only. A Plain-Language Guide for Patients and Caregivers, written by someone who's been in the anxious 3am Google rabbit hole and came out the other side.
by Alumigogo Books
Chapter 1: What Is DICER1 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.
Take a breath. Seriously. Right now, before you keep reading, just take one slow breath in, and one slow breath out. You just heard words you never expected to hear, and your brain is probably doing that thing where it grabs onto the fancy medical terms and turns them into monsters.
Let me take some of that monster-ness away, piece by piece. No judgment here, no jargon for the sake of showing off. Just one human being explaining what this actually is to another human being who just got scared.
What is DICER1 syndrome, really?
DICER1 syndrome is a genetic condition. That means it's something written into your DNA, the instruction manual your body uses to build and run every single cell in your body. You inherit your DNA from your parents, and it's pretty much the same in every cell from your hair follicles to your toenails to your heart muscle.
Here's the specific part: DICER1 is also the name of a gene. A gene is like a single chapter in that instruction manual. Each gene tells your body how to make one specific thing. The DICER1 gene makes a protein that works