Founded in 1981Educate, inspire, and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy, and research funding for better treatments and eventual cures.
Release the Butterfly
A Handbook for Parents & Caregivers of Children with Ichthyosis
It may be perhaps the most anguishing experience you will ever know. Your baby has a skin disorder called ichthyosis. The excitement you anticipate at the birth of your child has been tempered by fear and pain; the joy has been diluted by tears. It’s okay to cry, but remember this….life gets better.
Your child will laugh and dance and run and play, and will have friends. He or she, should they desire, will play sports, will attend the homecoming dance, will find a mate, and with diligence will achieve his or her life goals. Your baby will have a normal childhood and will lead a normal life.
However, much depends on you. Ichthyosis will influence your child’s development only as much as you let it. The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is here to answer your questions and help you through the challenges ahead, as you guide your child to their special place in the world.
This information is for parents, by parents, and is dedicated to new parents of children with ichthyosis. We hope that it meets your needs during a strange and confusing time: caring for a child affected by a rare, genetic skin disease.
The original printing of this book, in 1994, was the result of many hours of hard work by a devoted group of parents of children with ichthyosis and medical professionals. The parents set out to write something that would have been helpful when they were a new parent of a child with ichthyosis: a useful source of information about the practical, day-to-day matters of caring for a child with ichthyosis.
This information has been edited several times since its original printing to include the most up-to-date medical information and practical advice.
Originally Written By
Second Edition Editors
Second Edition Medical Editors
Sherri Bale, PhD
Anne Lucky, MD
Joseph McGuire, MD
Leonard Milstone, MD
Virginia Sybert, MD
Mary Williams, MD
This booklet is dedicated to all the children affected with ichthyosis
This information is provided as a service to patients and parents of patients who have ichthyosis. It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents. Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.