Publications/Educational Library

Ichthyosis:
An Overview
[Download PDF]  [disponible en Español]
Describes the primary types of ichthyosis and answers some frequently asked questions.

• Overview
• Natural Skin Structure & Function and What goes Wrong in the Ichthyoses
• The Appearance of the Skin in Ichthyosis
• The Implications of Ichthyosis
• Diagnosis
• Treatment of Ichthyosis and Related Skin Conditions
• Conclusion

Ichthyosis:
The Genetics of its Inheritance
[Download PDF]
Provides a more detailed description of the genetic inheritance patterns of the different forms of ichthyosis.

• Introduction
• An Introduction to Basic Genetics
• How Genes are Passed and Traced
• Autosomal Recessive Inheritance
• Autosomal Dominant Inheritance
• Where do Dominant Genes Start?
• Recessive X-linked Inheritance
• Summary

Release the Butterfly:
A Handbook for Parents & Caregivers of Children with Ichthyosis
[PDF available soon - disponible en Español pronto]
A comprehensive caregiving guide for anyone caring for a person with ichthyosis.

• Introduction

• What is Ichthyosis?

• Dealing With Doctors
• Feeling at Home in a Neonatal Intensive Care Unit
• Bonding with your Baby
• Breast Feeding your Baby
• Doctors for Long-Term Care
• The Finances of Major Medical Events

• General Advice about the Skin
• Baths
• Creams, Lotions & Ointments
• Diapers & Clothing
• Infections
• Nutrition & Ichthyosis
• Overheating
• Systematic Therapies: The Retinoids
• Special Tips

• Coping
• Grandparents
• Siblings and their Special Needs
• Dealing with Grief

• Raising a Happy, Well-Adjusted Child
• Child Care & Preschool
• Adding to your Family
• Resources

Ichthyosis:
A Guide for Teachers and
School Personnel
[PDF available soon - disponible en Español pronto] A tool for parents to help make the transition to the school environment for children with ichthyosis.

• Introduction

• What is Ichthyosis
• Primary Symptoms & Associated Problems
• Treating Ichthyosis
• Teacher, Parent & Child
• Questions to ask the Parent
• Overheating: Warning Signs & Remedies
• Treating Cuts & Scrapes

• Issues in Infancy
• Issues for Toddlers & Preschoolers
• Issues for the School Aged
• Special Education Services Considerations
• Junior High and High School Students
• Summary: Key Points Checklist

• Books for Pre-School and Young Children
• Books for School-Age Children
• Books for Teachers
• Other Resources for Teachers
• Helpful Websites
• Bibliography

Ichthyosis
Disease Type Fact Sheets
Designed to provide more in-depth information about each type of ichthyosis.

• Ichthyosis Summary
• Collodion Baby
• Congenital Ichthyosiform Erythroderma (CIE)
• Darier Disease
• Relationship between eczema and ichthyosis
• Epidermal Nevus Syndrome
• Epidermolytic Hyperkeratosis (EHK)
• Harlequin Ichthyosis
• Ichthyosis Hystrix
• Ichthyosis Vulgaris
• KID Syndrome
• Lamellar Ichthyosis
• Netherton Syndrome
• Pachyonychia Congenita
• Palmoplantar Keratodermas (PPK's)
• X-Linked Ichthyosis

Ichthyosis
Resource Sheets
Topics related to the management of ichthyosis.

• Chicken Pox
• Ear Wax
• Itching
• Medicine Assistance Programs
• Overheating
• Retinoids
• Scalp Scale
• Skin Care Tips
• Testing Facilities for Diagnosis of X-Linked Ichthyosis

New Parent Information

• Infant Care Sheet - Collodion Baby
• Infant Care Sheet - EHK and CIE
• Prenatal Diagnosis and Testing for X-Linked Ichthyosis