Founded in 1981To improve lives and seek cures for those affected by ichthyosis and related skin types.
Resources & Further Readings
Books for pre-school and young children
Alexander, Liza. No Red Monsters Allowed. Sesame Street/Golden Press, Western Publishing Company, in conjunction with the Children’s Television Workshop, 1991.
Familiar Sesame Street characters find that red monsters can be as much fun to play with as blue monsters.
Carlson, Nancy. I Like Me. Puffin Books, 1988. A little pig with great self-esteem shows children how to be their own best friend.
Cole, Joanna. Don’t Call Me Names! Random House, 1990.
Learning to cope with teasing from peers.
Quincey, Mary Beth. Why Does That Man Have Such A Big Nose? Parenting Press, 1986. “Different does not have to mean bad.” This book fosters positive attitudes in children toward all kinds of people by giving honest, positive answers to children’s questions about others.
Estes, Eleanor. The Hundred Dresses. Voyager Books, Harcourt Brace Javanovich, 1994. This timeless classic addresses the issues of stigma at school. A young girl has ambivalent feelings when her popular friend teases an immigrant child.
Webster-Doyle, Terrence. For Young People: Why Is Everybody Always Picking On Me. A Guide To Handling Bullies. Atrium Society Press, 1991.
A practical and sensitive guide not just for the child being bullied, but for the bully as well.
Books for teachers
Featherstofle, Helen. A Difference in the Family. Penguin Books, 1980.
How families cope with their feelings of fear, anger, guilt and loneliness resulting from having a child with a disability. Includes tips for the professionals-doctors, therapists and teachers.
Foundation for Ichthyosis & Related Skin Types, Inc. TM (FIRST). Ichthyosis: An Overview. FIRST, 1987.
This booklet explains ichthyosis, its symptoms, treatments and psychosocial implications in straightforward readable format.
Matiella, Ana C. Positively Different: Creating a Bias-Free Environment for Young Children. Network Publications, ETR Associates, 1991. Helpful suggestions for teachers, parents and other care providers of children up to age ten.
Other resources for teachers
Foundation for Ichthyosis & Related Skin Types, Inc.TM (FIRST)
2616 N. Broad Street
Colmar, PA 18915
A national nonprofit organization dedicated to educate, inspire, and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy, and research funding for better treatments and eventual cures.
Provides referrals, answers Inquiries, produces periodic regional and national conferences and meetings. Publications include:
Ichthyosis: An Overview
Ichthyosis: The Genetics of Its Inheritance
Release the Butterfly: A Handbook for Caregivers of Children with Ichthyosis
American Council on Education -- Health Resource CenterOne Dupont Circle, Ste. 800
Washington, DC 20036
Clearinghouse for information on education and training beyond high school for persons with disabilities. Provides resource directory, and list of 31 free publications, including
How to Choose a College: Guide for the Student with a Disability; Financial Aid for Students with Disabilities; Young Adults with Learning and Other Disabilities: Guide for Selecting Post-secondary Transition Programs.
National Information Center for Children and Youth With Disabilities (NICHCY)
P.O. Box 1492
Washington, DC 20013
Funded by the U.S. Department of Education, provides information on sources of assistance, rights of disabled children and their parents, appeal procedures, and advocacy. List of 43 free publications includes Preschoolers with Handicaps; Education for Youth with Special Needs -- What Do the Laws Say?; and Options After High School.
U.S. Department of Education - Clearinghouse on Disability Information
Office of Special Education and Rehabilitative Services
Room 3132, Switzer Bldg.
Washington, DC 20202
Specializes in federal programs and legislation. Inquiries, referrals. Publications include Summary of Existing Legislation Affecting Persons with Disabilities, and Pocket Guide to Federal Help for Individuals with Disabilities
Ichthyosis Bulletin Board Website
A service of Northern California Community Foundations, Inc.
National Clearing House on Post-Secondary Education for Individuals with Disabilities
U.S. Department of Education
Bowlby, John. Attachment and Loss, Vol. 1. New York: Basic Books, 1969.
Demis, Crounse, Dobson & McGuire (eds.). Clinical Dermatology, Vol. 1. Hagerstown: Harper & Row, 1979.
Enkson, Erik. Childhood and Society. New York: W.W. Norton, 1950.
Foundation for Ichthyosis & Related Skin Types, Inc.TM (FIRST). Ichthyosis: An Overview. Lansdale, PA: FIRST, 1987.
Foundation for Ichthyosis & Related Skin Types, Inc.TM (FIRST). Ichthyosis: The Genetics of Its Inheritance. Lansdale, PA: FIRST, 1992.
Foundation for Ichthyosis & Related Skin Types, Inc.TM (FIRST). Release the Butterfly: A Handbook for Caregivers of Children With Ichthyosis. Lansdale, PA: FIRST, 1994.
Kagen, Jerome. “The Emergence of Self,” The Journal of Psychology and Psychiatry, Vol. 23(4), pp. 363-38 1, 1982.
Karen, Robert. “Becoming Attached,” The Atlantic Monthly, Feb. 1990, pp. 35-70.
Mack, John. “Self Esteem and Its Development: An Overview,” in Aldon, S.L. (ed.) The Development and Sustaining of Self Esteem in Childhood, New York:
International Univ. Press, 1983.
Maddin, Stuart. Current Dermatologic Management, London: Mosby Company, 1-5.
Maddin, Stuart. Current Dermatologic Therapy. Philadelphia: W.B. Saunders, 1982.
Mahier, M.S. Rapprochement Subphase of the Separation-Individuation Process,” The Psycho-analytic Quarterly, Vol 41(4), pp. 487-506, 1973.
Singer, D.G. and Revenson, T.A. A Piaget Primer: How A Child Thinks. New York: Penguin Books, 1978.
Sroufe, A.L. “The Coherence of Individual Development: Early Care Attachment, and Subsequent Developmental Issues,” American Psychologist, Vol. 34(10), pp. 834-841, 1979.
Williams, M.L. and Elias, P.M. “Genetically Transmitted, Generalized Disorders of Cornification: The Ichthyoses,” Dermatologic Clinics, Vol. 5(1), pp. 155-178, 1987.
Richard G, Moss C, Traupe H, Pittelkow M, Lautenschlager S, Konig A, Happle R, Itin P. “Ichthyosis and disorders of cornification”. In: Pediatric Dermatology. Schachner L and Hancen RC (eds), 3rd edition, Mosby, New York, 2003. pp 385-445.
DiGiovanna JJ., “Ichthyoses”. In: Treatment of Skin Diseases. Lebwohl MG, Heymann WR, Berth-Jones J, Coulson I (eds), Mosby (Harcourt Publishers Limited), New York, 2002. pp 295-298.
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 the Foundation for Ichthyosis & Related Skin Types, Inc., Publications Review Committee, Medical & Scientific Advisory Board, nor Foundation staff and officials endorse any treatments or products reported in this booklet. All issues pertaining to the care and treatment of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of this complex disease.