FIRST Educators Guide

IC HTHY OSIS

E D U C ATO R S Learning for the classroom and beyond Ichthyosis: Educators | 1

INTRODUCTION This guide is intended to help meet the needs of a child in the classroom with a rare skin disorder called ichthyosis. It is also intended to help teachers and other school officials better understand the special care and treatment needs of the student with ichthyosis.

PART ONE: ICHTHYOSIS SYMPTOMS & TREATMENTS 1. What Is Ichthyosis?

The term ichthyosis derives from ichthy-, the Greek root for “fish.” This reference is to the skin’s scales, which some consider fish-like. Rather than a single disorder, ichthyosis denotes a family of related disorders.

The ichthyoses are a group of rare skin disorders whose primary symptoms include dry, thickened and scaly skin. In some forms, the skin blisters and peels, especially in infancy and childhood. Many people with ichthyosis have darkened, rough skin that may appear as scales separated by deep cracks. The severity scale goes from mildly affected to severe. Ichthyosis is an inherited, genetic disorder which may be present at birth or appear later in life. Ichthyosis is not contagious. Furthermore, these children enjoy touching, hugging, and the same kinds of physical contact that are enjoyed by any other child.

Ichthyosis is a disorder in which the body’s ability to produce the outermost layer of skin is defective. This may result from one or both of two problems; either the body manufactures skin too rapidly or the skin fails to shed properly from the surface. Either of these two interruptions results in the symptoms of ichthyosis: thickened, scaly skin.

2. Primary Symptoms and Associated Problems Symptoms can vary significantly from child to child. Some children are affected only locally (for example, only on the hands and feet), some have near-total body involvement. The skin may be reddish, extremely flaky, or the body may be covered with thicker, plate-like scales. Many children have significant scalp involvement, which inhibits hair growth. Some may have hearing problems caused by accumulations of skin that binds with natural waxes and blocks (or occludes) the ear canal. Some may have moderate to severe itching. Still others have moderate to severe body odor, which results from unavoidable accumulations of harmless bacteria beneath and between scales. Most children are at an increased risk for skin infection due to breakdowns in the skin’s natural barrier function.

Severely affected children may suffer from fine and/or gross motor impairment due to tautness of skin on the hands, and the soles of the feet.

However, the most significant danger for many children with ichthyosis in the classroom, and particularly on the playground, is overheating.

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Overheating results from the body’s inability to adequately sweat through pores blocked by thickened scale. This is a potentially serious problem and is detailed more fully in a later section.

Disruption of the skin’s barrier function also leads to excessive water loss. This is why the skin becomes so dry. In the extreme, this may lead to dehydration. Children with ichthyosis need to drink plenty of water or juice, and provisions should be made at school to allow this.

One form of ichthyosis deserves special mention: epidermolytic ichthyosis (EI). Children with EI have extremely fragile skin that is prone to blistering or tearing upon relatively mild trauma and is vulnerable to cuts and other skin breaks. Because of this, the risk of infection is higher than normal. Teachers should learn from the child’s parents the best ways to accommodate the special needs of the child with EI. Following is a summary of some common secondary problems that may affect children with ichthyosis: a. Overheating resulting from active play and/or a warm environment b. Body odor resulting from normal accumulation of bacteria between and beneath scale (it is important to note that the child is not unclean and probably bathes more than the average child) c. Hearing Impairment (and in some cases, resulting speech impairment) due to occlusion of the ear canal (some rare forms of ichthyosis involve neurosensory hearing loss). d. Sensitivity to bright sunlight and/or increased susceptibility to eye irritation resulting from ectropion, which is an eversion, or pulling away of the margin or lip of the eyelids, due to the tautness of facial skin e. Dry eyes (may need to apply eye drops and/or have difficulty reading long assignments) f. Susceptibility to infection due to cracks or breaks in the skin’s barrier g. Difficulty walking, running and/or jumping due to involvement of soles of feet (some children have difficulty wearing shoes) h. Itching i. Side effects from medications j. Difficulty with gross and/or fine motor skills k. Excessive water loss through the skin, leading to dehydration in extreme situations l. Possible hair loss, receding hairline, and/or excessive dandruff m. Special nutritional needs due to metabolic demands of excessive skin growth

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3. Treating Ichthyosis Because ichthyosis is a life-long condition, and because there is no cure, the goal of treatment is to alleviate symptoms and relieve discomfort. Two kinds of symptoms need attention: primary symptoms (thickened, dry, scaling skin, and in some cases severe blistering), and secondary problems (summarized above).

The goal in treating the primary symptoms of ichthyosis is moisturizing affected areas of skin while promoting exfoliation (normal shedding) of the skin’s outermost layer. Both goals are generally met with a regimen that includes application of topical preparations. Treatment of children with ichthyosis employs three main types of topical preparation: humectants, keratolytics, and emollients.

Humectants are a broad class of topical creams and lotions, which effectively penetrate and moisturize the skin by holding water in the stratum corneum. There are hundreds of effective humectants available over the counter and by prescription, including creams with urea and propylene glycol.

Keratolytics actively promote exfoliation by promoting the dissolution of bonds between individual cells of the stratum corneum, the outermost layer of skin. The most commonly used keratolytics are lactic acid, glycolic acid, and salicylic acid.

Emollients are skin lubricants, usually petrolatum or lanolin based. They moisturize the skin by preventing water from evaporating from the surface.

Children typically self-treat their skin or receive a thorough topical treatment regimen from one to four times per day (usually combined with baths), depending on the severity of their condition.

At school, a certain amount of maintenance treatment may be necessary. For this purpose, children with ichthyosis must have their essential treatment needs on hand. Maintenance treatment generally involves periodic applications of topical moisturizing creams or lotions.

Accommodations should be in place to allow the child time and privacy to do this. Preschoolers and young children may need a reminder from the teacher to apply lotion after water play, sand play, messy artwork or hand washing. However, most children know they are more comfortable when they use their lotions, and only require the necessary time and a place to do it discretely.

Of utmost importance is avoiding unnecessary self-consciousness and embarrassment. Steps must be taken to provide adequate privacy, and to avoid calling undo attention to the child’s special needs.

Children with ichthyosis are sometimes treated with oral medication.

Antibiotics may be prescribed for topical or systemic infections. In cases

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where a child is subject to chronic itching (pruritus), antihistamines and/or topical medications may be prescribed to help manage the problem and may make a child drowsy or inattentive.

Children with EI, particularly, should have a topical antibiotic on hand to apply to incidental cuts and scrapes.

Some severely affected young people may also be treated with systemic retinoids. The retinoids are vitamin A derivatives, potent drugs, and may have some side effects.

Children of all ages should be encouraged to be active participants in their own treatment. Taking on the responsibility of self-care will help the child develop a sense of independence, control, and competence, all of which help the child meet the normal developmental tasks of childhood.

4. Teacher, Parent and Child It is very difficult for a child to concentrate on learning when the skin is taut, cracked, sore, or itching. Some symptoms of ichthyosis can make simple activities, like sitting still difficult, if not painful. Students who shed excess skin scales can be taught to brush off shared chairs and tables when moving from on activity to the next.

Because ichthyosis is a complex disorder, the first goal is to ascertain the child’s base level of comfort and physical mobility. The child’s parents are the best source for this information, as well as for updates on the child’s day-to-day care requirements. Parents and teachers might find it helpful to hold a conference prior to beginning a new school or school year. The conference could include parents, school nurse, principal and other appropriate staff such as counselor or physical education instructor.

If possible, the child’s physician should also be involved. This will provide a forum for ensuring a well-integrated approach to support the child’s special needs in school. Principals can help by making sure the larger school community is aware of the child’s condition and special needs, so that crossing guards, substitute teachers, and lunchroom workers do not inadvertently contribute to a child’s emotional and physical discomfort.

Special Education approaches are considered in a later section of this booklet.

The second goal is easing the child’s transition into the society of his or her classmates. Because ichthyosis is usually quite visible, the child’s classmates may benefit from a general education about ichthyosis.

This can be handled in any number of ways. Some parents could be available the first day of class to answer questions. The student with ichthyosis probably has a ready response to queries about his or her skin. A teacher could be instrumental in supplying words or phrases to better explain some skin differences. Other common strategies include 6 | FIRST

statements written by parents to teachers that introduce their child as a singer, skater, pianist, etc., who happens to have ichthyosis. Letters may be distributed around the school, and perhaps even to parents of the child’s classmates, particularly in the younger grades. It is critical to consider the age of the children and not to draw undue attention upon the child who may look different. A common question that parents often struggle with is “Do we allow our child to be present during the ichthyosis discussion with the classroom?” There are many benefits for both the child and classmates when they are present during the discussion. The child is able to actively engage in the discussion and hear what is being said regarding their skin disorder. It also serves as an opportunity for self-expression in a safe and controlled environment, and it gives them empowerment.

It is important that classmates understand ichthyosis as best they can.

Generally, a straightforward, direct approach is best.

Teachers can plan ahead to anticipate or avoid a few commonly problematic situations: a. Situations where students must hold hands: age-appropriate interventions might include advanced notice and allowing the student to have a consistent, trusted partner for all such activities. The goal is to reduce the chance of rejection. b. Activities requiring students to go barefoot: at minimum, the student and/or their parents should be notified ahead of time and allowed an alternative activity. c. N egative attention to visible skin shedding or lotion marks: people with ichthyosis commonly leave skin flakes of various sizes around their environment. Additionally, some surfaces show marks from moisturizers. d. Hand washing and hand sanitizer: students with ichthyosis may need special accommodations to keep their skin moisturized.

5. Questions to Ask the Parents It is important that open lines of communication exist on an ongoing basis, and that the teacher and other school officials have the greatest possible access to information that will help raise the quality and safety of the child’s school experience.

The following questions may help the teacher learn important information from the child’s family. a. How extensive is the child’s current medical treatment? b. What medical treatments must take place during school hours? c. A re there side effects from these treatments? If so, how can the teacher best help the child cope with them? d. What considerations need to be made for the child that may Ichthyosis: Educators | 7

be outside the normal scope of classroom or school rules or conventions? For example, does the child need special privileges for moving about the classroom to maintain physical comfort, or the freedom to leave the classroom to drink water when needed? Some children find that sitting on hard surfaces for prolonged periods is painful, and a special cushion may be needed. Clothing is a key issue for children with ichthyosis, and conflicts with dress codes may need to be addressed (including the possible need for brimmed hats or sunglasses out of doors, or the use of hats in general in cases of severe scalp involvement causing embarrassing hair loss or excessive dandruff). e. What are the child’s and family’s preferred way of handling intrusive questions, or ridicule or abuse from peers and adults? f. Do changes need to be made in the school environment, particularly regarding excessive heat? g. What considerations and precautions need to be made regarding outdoor play in hot weather? Under what circumstances will the child need sunscreen? Are specially designed cooling vests available for the child? Are teachers and other playground monitors confident in their ability to recognize warning signs of overheating? h. Do considerations need to be made regarding transportation to and from school, on field trips, transportation to other school functions?

Once there is a sound understanding of the child’s skills and comfort level, it should be relatively easy to monitor activity to ensure a safe and productive school environment.

6. Overheating: Warning Signs & Remedies For some children with ichthyosis, the inability of the body to properly regulate its temperature is the most significant and potentially dangerous of secondary effects. The difficulty arises due to the scales and thickened skin, which occlude pores, interrupting the body’s ability to sweat. This can result in a rapid and dangerous rise in the body’s core temperature upon exertion, including normal play. The problem is particularly serious when the air temperature is high, and even more so when high humidity accompanies high temperature. Excessive body temperature can be very dangerous.

In hot weather, or in the gym, the child must have easy access to drinking water or a water bottle at all times.

The best way to avoid dangerous overheating is taking preventive measures and being aware of the warning signs (see below). Teachers must be prepared to intervene at the first sign of overheating. This may mean ceasing the game or activity which is leading to overheating, removing the child from an overly warm environment, allowing the child to rest and externally cool the child by applying cool, damp wash cloths or spritzing with a bottle of cold water, or other steps that parents and school officials 8 | FIRST

feel are appropriate. Some children with ichthyosis have therapeutic cooling vests, which they can put on at appropriate times.

It is important to know that the child with ichthyosis might not perspire when overheated.

Warning Signs of Overheating • Child’s skin becomes red, particularly the face (usually the first early sign, though not necessarily an indicator of serious overheating).

• Child’s heartrate quickens.

• Child may become cranky; skin feels warm/hot to touch, but no sweat is evident; child may feel weak and may complain of being too warm (teacher should intervene).

• Child may become increasingly listless or lethargic (this signifies a midstage at which active steps must be taken to remedy the situation); body temperature may elevate to 106º F or higher; pulse may be rapid and strong; breathing may be labored.

• Child may feel dizzy, faint or pass out and convulsions may ensue (the situation has become critical and aggressive steps must be taken to bring temperature down, including removing child to cool environment, placement in cool bath, if possible, or wrapping in cold, wet towels or sheets; this is a medical emergency and medical assistance must be sought and the parents contacted); if unattended to, coma and death may result.

7. Treating Cuts and Scrapes Unlike other children, those with ichthyosis may require uncommon treatments for otherwise common cuts and scrapes. Consultation with the child’s parents should guide treatment.

GENERAL GUIDELINES Normal Band-Aids may not work well on children with ichthyosis. Either they fail to stick to skin, or they may stick too well and cause significant tearing of the skin when removed. When bandaging is necessary, place a non-adherent sterile dressing over the wound, wrap the entire limb or trunk with a nonstick gauze and use surgical tape to secure the bandaging (i.e., tape on bandage, not on skin).

If the child in your care has epidermolytic ichthyosis (EI) in which the skin is particularly fragile or blistering, consult with parents and the child’s physician for guidelines on treatment and preventive measures.

Common fevers due to an otherwise mild illness may also pose a problem.

Parents should be contacted if the child develops a fever, which passes a threshold determined in advance by parents, physician and school officials.

Because childhood illnesses like chicken pox and measles may affect the child with ichthyosis more severely than other children, parents should be informed if there is suspicion of an infectious disorder in the student population.

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PART TWO: DEVELOPMENTAL CHALLENGES FOR CHILDREN WITH ICHTHYOSIS 1. ISSUES IN INFANCY It is important to review the issues that infants with ichthyosis face so we can better understand challenges that young people with ichthyosis face as students.

There are two threats to the infant’s development of a healthy sense of self and trust. First is separation from the mother at birth and continuing isolation if the infant is admitted to a neonatal intensive care unit. The experience interrupts the infant’s opportunity to bond with the mother and develop trust in consistent care from a single caregiver.

The second risk is intrinsic to ichthyotic skin. Because the baby was likely born with raw, blistering or cracking skin, in some cases as striking as burn victims, the infant’s basic need for touch is compromised. Additionally, the repertoire of comforting behaviors that infants frequently develop-such as thumb sucking and rocking-may be inhibited. These circumstances produce a powerful impact on the infant, with possible repercussions in later development.

Caregivers should engage the infant in activities that stimulate development and provide distraction. Provide an environment that stimulates the infant’s senses of touch, smell, vision and hearing. Soft blankets or pieces of fabric, stuffed animals and sturdy rattles to grasp and hold will appeal to the child‘s sense of touch. Music, as well as the soothing use of voice, may be comforting. Mirrors can be placed at the child’s eye level, and mobiles overhead, to engage the infant’s attention. Furthermore, because infants develop a great deal of their self-esteem through touch, the caregiver should include physical touching in routine care as much as circumstances allow.

Through daily interaction with the infant, the care giving professional will soon become attuned to deciphering and responding to the child’s needs for interaction and comforting.

2. ISSUES FOR TODDLERS AND PRESCHOOLERS For the parent or caregiver, the challenge at this stage is to let the child explore the environment while not giving in to the urge to overprotect.

Because childcare and preschool programs are frequently the first social experiences the child has outside the family, parents may be anxious about the reactions of other adults and children to their child’s appearance. This may also be the first opportunity for the child to recognize that she is visibly different from peers.

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The child with ichthyosis may be more vulnerable to separation anxiety due to either impaired body image or traumatization from hospital stays.

Allowing the child to explore this issue through play and literature can help lessen anxiety.

The challenge is to provide open and honest answers to questions that will inevitably arise. There is no advantage in trying to protect the child from his or her condition. It is essential that children be able to articulate their own grasp of the situation. Words become a valuable tool and empower the child to cope with daily questions from people around her.

Teachers are powerful role models for young children. Open and positive responses to other children‘s questions and concerns will set the tone for how children deal with differences in general. Preschoolers need concrete, simple explanations for these visible differences. For example, “Johnny’s skin is different than yours, but you cannot catch it. He was born that way.

Everybody has skin that looks different. How is your skin different from your friend’s skin?”

The obvious nature of this disorder forces the student to develop coping skills related to the issue of looking different. What the student seeks is acceptance and less attention. A teacher would be wise to hold an attitude of benign neglect. Cuts and injuries to ichthyotic skin are common and can look shocking, but often heal quite rapidly.

Children often gain self-esteem by helping others. Teachers can encourage community spirit by assigning helpers whose job is calling “time out” during physical activity when they see their friend getting overheated. Books can also be a positive tool for exploring how children feel about all kinds of differences. A list of suggested readings is included at the back of this manual.

3. ISSUES FOR THE SCHOOL-AGED School-aged children are ready to apply themselves to specific skills and tasks. The challenge is to nurture the child’s sense of competency. On the other hand, danger lies in the child possibly developing a sense of inadequacy or inferiority, which in turn may lead to low self-esteem and apathy.

A child may do fine academically but have difficulty socially or physically.

Appearance factors may lead to social isolation, leading to separation from their peers. Physical limitations may lead to below average performance in games and sports. Resulting low self-esteem may impact academic performance as well. These children should be encouraged to focus on at least one thing they excel at, both in the academic and extracurricular realms. In the end, Teachers must have the same academic expectations for children with ichthyosis that they have for others. Certainly, there may be Ichthyosis: Educators | 11

times when accommodations in assignments may be needed due to motor issues or problems with dry, tired eyes. Allow and encourage the child’s sense of humor, even self-deprecation, or stating the obvious about his or her appearance. Don’t allow the child to overuse adult help at the expense of strengthening the ego.

In the athletic arena, however, the school nurse’s input is a critical piece in assessing a child’s capacity and options while participating in Field Day or sports where a child is exposed to 80°+ temperatures. Limitations imposed by others can inhibit development of the child’s full potential.

Some of the most difficult and painful issues for children with ichthyosis are social isolation, teasing and ridicule. The teacher faces a true balancing act of support, while at the same time trying not to single the child out.

General class discussions about prejudice, cultural and physical differences and friendship will help address these important issues without giving undue attention to the child with ichthyosis. Discussions about values and character building reinforce the true nature of our happiness. The crucial message is that “different” does not imply a value judgment-better or worse. As with preschoolers, enlisting peers as helpers can foster understanding and respect for the child with ichthyosis.

4. SPECIAL EDUCATION SERVICES CONSIDERATIONS The range of skin disorders and a specific condition’s unique expression in your student with ichthyosis is just one piece of the puzzle before you. Skin issues alone may require a formal designation of the challenges presented by ichthyosis via 504 Education, Special Education or IDEA Laws. Since 1974, the Federal government has legislated schools to provide students with special needs to be in the most “normal” setting possible and still provide adjustments or remediation to encourage the child’s maximum potential.

Parental and professional judgment is synthesized at a meeting of the child study team or an Individual Education Plan (IEP) meeting. Primary concerns must be for the safest, least restrictive and most appropriate learning environment for the child. Adequate deliberation at this meeting should address issues surrounding physical environment, socialization, and fostering the maximum growth of this student.

5. JUNIOR HIGH AND HIGH SCHOOL STUDENTS Marked by rapid physical growth and pronounced physical changes, adolescence presents a stage where teens are frequently more concerned with appearance in the eyes of others than with their innate sense of self.

Often, they are caught in conflict between the joys of being a child and aching for the freedom they associate with being an adult. Faced with the added challenge of drawing on existing skills and interests as they prepare for life as independent adults, their dilemma can be summed up with three 12 | FIRST

questions: “Who am I?” “How do I fit in?” and “What am I going to do with my life?”

By this time, teens with ichthyosis have probably mastered the physical management of their skin disorder but the new focus on self-image can cause anxiety and self-doubt. As peers become more important, and physical appearance and fashion play prominent roles in developing selfimage, the need for social acceptance becomes paramount.

Many teens feel isolated and misunderstood at this time. Those with ichthyosis may be particularly vulnerable due to their being different in a visible way. The pressures of dating add concerns about physical attractiveness and peer-appeal.

Transitioning to junior high or high school means leaving the security of a school where most people knew and accepted the students’ uniqueness and are now faced with teaching those in the new environment about their condition, cultivating a new social environment, and establishing a new comfort zone. This is a lot for any teen who may be more vulnerable to depression.

Teens must be helped to find their own answers, even if this means watching them stumble along the way. It is important for the teacher to be an educator, sharing with colleagues, substitute teachers, student teachers and aides, information about the student’s appearance, special needs and other issues. The more information others have, the more everyone can work together to make the school a supportive environment.

Above all, the teacher’s positive, open relationship with the teen can make a remarkable and lasting difference at a time when everything, it seems, is changing and uncertain.

6. SUMMARY: KEY POINTS CHECKLIST •S tart With the Positive - Every child has something unique to offer the world. Focus on what the child can do.

•R espect the Child’s Physical Limitations - Create a supportive environment that allows the child to take self-care measures without embarrassment or shame.

•D ifferent is OK - This is the crucial message that must be communicated to the child’s peer group. Answer questions about all physical differences with openness and frankness.

•B e Creative - When a child cannot participate in outdoor activities, develop meaningful and productive alternatives.

•D on’t Impose Scholastic Limits - Ichthyosis is physical, not cognitive.

Avoid projecting physical differences into the academic realm.

•D on’t Be Overly Protective Ichthyosis: Educators | 13

PART THREE: RESOURCES & FURTHER READING 1. 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 selfesteem 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.

2. BOOKS FOR SCHOOL-AGE CHILDREN 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.

Rustad, Andrea. Skinvincible. Mascot Books, 2023. The main character, Cece, is a little girl with ichthyosis. Follow her on the day of her big performance in her school’s talent show, while learning about skin, ichthyosis, and standing up against bullying!

3. 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 doctors, therapists and teachers.

Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST). Ichthyosis: Overview. FIRST. This booklet explains ichthyosis, its symptoms, treatments and psychosocial implications in straightforward readable format.

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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.

Westlake, Courtney A Different Beautiful, Discovering and Celebrating Beauty in Places You Never Expected. Shiloh Run Press an imprint of Barbour Publishing, 2016. In A Different Beautiful, Courtney explores what her family has discovered in raising a child with physical differences and what she has learned about true beauty.

4. OTHER RESOURCES FOR TEACHERS Foundation for Ichthyosis & Related Skin Types, Inc. ® (FIRST) PO Box 1067, Lansdale PA 194446; 215-997-9400; info@firstskinfoundation.org An international nonprofit organization whose mission is to improve lives and seek cures for those affected by ichthyosis and related skin types. Provides referrals, answers Inquiries, produces periodic regional and national conferences and meetings. Publications include booklets, pamphlets, and a newsletter.

American Council on Education -- Health Resource Center One Dupont Circle, Ste. 800, Washington, DC 20036 / (800) 544-3284: (202) 939-9300 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 (800) 999-5599; (703) 893-6061 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 / (202) 732-1241; 732-1723 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.

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5. HELPFUL WEBSITES Foundation for Ichthyosis & Related Skin Types, Inc. ® Website www.firstskinfoundation.org U.S. Department of Education www.ed.gov

6. BIBLIOGRAPHY 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.

Erikson, Erik. Childhood and Society. New York: W.W. Norton, 1950.

Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST). Ichthyosis: Overview. Lansdale, PA: FIRST, 2024.

Foundation for Ichthyosis & Related Skin Types, Inc. ® (FIRST). Ichthyosis: Genetics. Lansdale, PA: FIRST, 2024.

Foundation for Ichthyosis & Related Skin Types, Inc. ® (FIRST). Ichthyosis: Caregivers. Lansdale, PA: FIRST, 2024.

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.

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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.

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Copyright information 2024 Disclaimer All rights reserved. No portion of the contents of this book may be reproduced or transmitted in any form or by any means without the written permission from the FIRST.

This publication 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, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments reported in this booklet. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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