Skip over main navigation
  • Sign up
  • Log in
  • Basket: (0 items)
Ichthyosis Support Group - People who care about ichthyosis
  • Search
  • Facebook
  • Twitter
Become a member Contact Us Donate
Menu
  • About Us
    • What We Do
    • Our Impact
    • Where We Work
    • History
    • Awards
    • Our Team
      • Trustees
      • Staff
  • What Is Ichthyosis
  • Caring For Ichthyosis
    • Condition Information
    • Inheritance & Genetics
    • Treatments
    • Parents
    • Talking to Your Doctor
    • Prescribing Issues
    • General Information
  • Get Help
    • Become A Member
    • Member Stories
    • Helpline
    • Other Sources Of Help
  • Support Our Work
    • Make a Donation
    • Fundraise for Us
      • Set Up A Fundraising Page
      • Our Fundraisers
    • Fundraising Ideas
      • Online Fundraising
      • Corporate Charity Support Pack
      • Fundraising Pack
      • Play Unity Lottery!
    • Raise Awareness
      • Raising Awareness
      • Ichthyosis Awareness Month (IAM)
      • Share Your Story With The Media
    • Volunteer
    • Corporate Support
  • Events
    • Member Events
    • Fundraising Events
  • Latest
    • Latest News
    • ISG Newsletters
    • Research
      • Ichthyosis Related Research
      • Participate In Research
      • Research Funded By The ISG
    • In The Media
      • Tell Your Story
      • Case Studies
  • Shop
  • Admin
    • Log in
  • Basket: (0 items)
  • information-for-parents
  1. Caring For Ichthyosis
  2. Parents

Information For Parents

My Story Ichthyosis Booklet

Expand

Download The My Story Ichthyosis Booklet

To find out more about the ISG or become a member please get in touch in one of the following ways: 

By Phone

0845 602 9202 

By Email: 

[email protected] 

By Post: 

Ichthyosis Support Group 

PO Box 1242, Yateley GU47 7FL 

Facebook: 

facebook.com/ichthyosissupportgroup 

Twitter: 

twitter.com/ISG_Charity

Published: 2nd March, 2020

Updated: 27th May, 2020

Author: Liz Dale

Related topics:
  • Information For Parents
Share this page
  • Email
  • Facebook
  • Twitter

ISG Pre and Primary Schools Pack

Expand

Download The Pre and Primary School Pack

To find out more about the ISG or become a member please get in touch in one of the following ways: 

By Phone

0845 602 9202 

By Email: 

[email protected] 

By Post: 

Ichthyosis Support Group 

PO Box 1242, Yateley GU47 7FL 

Facebook: 

facebook.com/ichthyosissupportgroup 

Twitter: 

twitter.com/ISG_Charity

Published: 2nd March, 2020

Updated: 20th May, 2020

Author: Liz Dale

Related topics:
  • Information For Parents
Share this page
  • Email
  • Facebook
  • Twitter

Guide for Carers and Teachers

Expand

What is ichthyosis?

The name ichthyosis covers a family of related disorders whose primary symptoms include dry, thickened and scaly skin.  In some forms, the skin blisters and peels.  The skin may become darkened rough and appear as scales separated by deep cracks.  It is an inherited, genetic disease which may be present at birth, or appear later in life.  It is not contagious.  The body’s ability to produce the outermost layer of the skin is disrupted.  The outer layer is either manufactured too rapidly, or fails to shed normally from the skin surface.

Symptoms of ichthyosis

Symptoms vary significantly from child to child.  Mild forms, such as ichthyosis vulgaris may appear only as dry skin affecting such areas such as the hands and feet, whilst others exhibit total body involvement.  The skin may be reddish, extremely flaky, or the body may be covered in plate-like scales.  Hair growth may be retarded if the scalp is affected.

Problems

The following problems may be encountered:-

  • Susceptibility to infection due to cracks or breaks in the skin’s barrier. This may be more prevalent in cold weather.
  • Difficulty with achievement of gross or fine motor skills due to tautness of the skin on the hands, and cracking of the skin on the soles of the feet. (Some children have problems wearing shoes).
  • Sensitivity to bright sunshine and/or increased susceptibility to eye irritation resulting from the pulling away of the margins of the eyelids due to the tautness of facial skin.
  • Overheating resulting from active play and/or too warm an environment. This is due to the body’s inability to sweat through pores that are blocked by thickened skin.
  • Excessive water loss through the skin, leading to dehydration in extreme situations. The skin’s barrier function becomes disrupted.
  • Body odour resulting from normal accumulation of bacteria between and beneath scales.
  • Possible hair loss, receding hairline, and/or excessive dandruff.
  • Hearing impairment due to exfoliated skin binding with natural waxes blocking the ear canal.
  • Itching as a result of dryness of the skin.
  • Side effects from medications.

 Carer’s Involvement

 Toddlers & Pre-schoolers

  • Let the child explore his environment, do not over-protect. Allow child to overcome separation anxiety to which he/she may be vulnerable, through literature and open-ended dramatic play.  The child then has opportunities to explore his/her feelings about separation.
  • Encourage the child to tell other children that he/she has ichthyosis, a genetic disorder. It is essential that children be allowed to articulate their own grasp of the situation.
  • Explain to the child’s peers the reasons for visible differences. Open and positive responses to other children’s questions will set the tone for how children deal with more general differences.

School Age Children

  • Be aware of signs of overheating.  Reddening of the skin, particularly the face (usually the first sign, though not necessarily an indicator of serious overheating). In hot weather, or in a very warm environment, the child must have easy access to drinking water.  The child should perceive that teachers/carers are supporters in this respect, rather than obstacles to comfort and health.  Interrupting the game or activity that causes the overheating should be allowed so that the child can rest and apply damp cloths to reduce the temperature.  Irritability, listlessness, lethargy and weakness may be the outcome of overheating, so that the child is labelled slow, lazy or a poor athletic performer by uninformed teachers.  The child is then at risk of developing poor self-esteem.
  • Teachers and N.T.A.’s must have the same academic expectations for children with ichthyosis that they have for ‘normal’ children.
  • Social isolation, teasing, ridicule and bullying should be handled carefully. A true balancing act is needed, on the one hand being supportive, whilst at the same time not singling the child out for special attention, which could cause further ostracism and ridicule.  General class discussions about prejudice, differences and the reasons for them, and friendships may address these important issues without focusing on a child with ichthyosis.
  • At the beginning of a school year, it is important that all teachers/carers are aware of any problems so as to ascertain the child’s base level of comfort and physical mobility. It is difficult for a child to concentrate on learning if the skin is taut, cracked, sore or itching.  The child’s parents are the best source for this information as well as day-to-day requirements.  These may include the need to apply topical creams and lotions to moisturise the skin during the school day.  Provision should be made to allow the time and privacy for this.  This should be carried out to fit around the normal school day so it does not affect the child thus possibly making them feel isolated. Children with Epidermolytic Hyperkeratosis (or more simply, EHK), which is also known as Bullous Congenital Ichthyosiform Erythroderma (BCIE) should have access to a topical antibiotic to be applied to incidental cuts and scratches.

Children of all ages should be encouraged to be active participants in their own treatment in order to create a responsibility for self care.

Teenagers

By this time, teenagers have probably mastered the physical management of ichthyosis.  The need for social acceptance becomes paramount.  At this stage, the teacher in charge of pastoral care can be supportive in the role of listener and mentor as well as help the teenager to coping mechanisms and a personal style that works best for them.

 Keys points to remember: -

  • Start with the positive, focusing on the things in which the student excels.
  • Respect the child’s/teenager’s physical limitations, and endeavour to find meaningful and productive alternatives when outdoor activities are limited.
  • Communicate to fellow pupils that difference is not bad. Answer questions about all physical differences with openness and frankness.  Bullying and depression are only heightened by the ignorance that grows out of evading the issue altogether.

Download the Guide for Carers and Teachers

To find out more about the ISG or become a member please get in touch in one of the following ways: 

By Phone

0845 602 9202 

By Email: 

[email protected] 

By Post: 

Ichthyosis Support Group 

PO Box 1242, Yateley GU47 7FL 

Facebook: 

facebook.com/ichthyosissupportgroup 

Twitter: 

twitter.com/ISG_Charity

Published: 2nd March, 2020

Updated: 20th May, 2020

Author: Liz Dale

Related topics:
  • Information For Parents
Share this page
  • Email
  • Facebook
  • Twitter

True Blue Hand Story

Expand

This book was written by the mother of a child with ichthyosis.  She wanted to raise awareness of 'difference' amongst children and adults and wrote this book to help chidren understand what it's like living with a visible difference.  The book also helps adults to talk to children about visible difference and explore and explain to children.

It is natural to be uncomfortable with things unkown to us.  Building insight is a huge part of supporting our children's positive approach and experience with uniqueness.

Download The True Blue Hand Book

To find out more about the ISG or become a member please get in touch in one of the following ways: 

By Phone

0845 602 9202 

By Email: 

[email protected] 

By Post: 

Ichthyosis Support Group 

PO Box 1242, Yateley GU47 7FL 

Facebook: 

facebook.com/ichthyosissupportgroup 

Twitter: 

twitter.com/ISG_Charity

Published: 2nd March, 2020

Updated: 20th May, 2020

Author: Liz Dale

Related topics:
  • Information For Parents
Share this page
  • Email
  • Facebook
  • Twitter

Childrens Questions

Expand

Download the Children's Questions Factsheet

To find out more about the ISG or become a member please get in touch in one of the following ways: 

By Phone

0845 602 9202 

By Email: 

[email protected] 

By Post: 

Ichthyosis Support Group 

PO Box 1242, Yateley GU47 7FL 

Facebook: 

facebook.com/ichthyosissupportgroup 

Twitter: 

twitter.com/ISG_Charity

Published: 2nd March, 2020

Updated: 20th May, 2020

Author: Liz Dale

Related topics:
  • Information For Parents
Share this page
  • Email
  • Facebook
  • Twitter
Back to top

Showing 10 of 5

Latest

  • Development of a needs assessment tool for caregivers of children affected with ichthyosis

    Development of a needs assessment tool for caregivers of children affected with ichthyosis

    Participants wanted to take part in an online survey for caregivers of children affected with ichthyosis

  • WaterSure Scheme

    WaterSure Scheme

    WaterSure is a scheme which helps people on specific benefits on a water meter (or waiting for one to be installed) with their water bills.

  • Seasonal Winter Get Together

    Seasonal Winter Get Together

    Come together virtually for our ‘Seasonal Winter Get Together’. A fun filled evening of entertainment including talent competition, fancy dress and quiz.

  • New product - Udrate

    New product - Udrate

    Following the discontinuation of Calmurid, Udrate is the new product available containing Urea and Lactic acid.

Most read

  • New product - Udrate

    New product - Udrate

    Following the discontinuation of Calmurid, Udrate is the new product available containing Urea and Lactic acid.

  • Accessibility

  • Seasonal Winter Get Together

    Seasonal Winter Get Together

    Come together virtually for our ‘Seasonal Winter Get Together’. A fun filled evening of entertainment including talent competition, fancy dress and quiz.

  • Donate

    Donate

    As a registered charity any donation you wish to pledge will be gratefully received and will benefit the support group and its ability to help all the people who are affected by this family of conditions.

  • Privacy Policy

  • Body Image Dissatisfaction

    Body Image Dissatisfaction

    Participants needed for a study exploring experiences and body image dissatisfaction in association with dermatological conditions including ichthyosis.

  • The Giving Room

    The Giving Room

    If you are using video platforms such as Zoom or Teams now you have the opportunity to raise money for us at the same time with our virtual backgrounds.

  • Cookie Policy

  • Example - Our impact

    Inspire visitors with all the amazing change you've achieved. It's your chance to show off!

  • Meet our members

    Meet our members

    Some of our members have generously shared their personal stories of living with ichthyosis. These stories feature many types of ichthyosis from a wide range of people.

Seasonal Winter Get Together

Seasonal Winter Get Together

Come together virtually for our ‘Seasonal Winter Get Together’. A fun filled evening of entertainment including talent competition, fancy dress and quiz. Read more

Published: 20th November, 2020

Author: Mandy Aldwin

Related topics:
  • Latest News
  • Homepage-Latest-Events

Make a donation

Please select a donation amount (required)
Set up a regular payment Donate

Find us

Postal Address
Ichthyosis Support Group
PO Box 1242
Yateley
GU47 7FL

+44 (0)845 602 9202
[email protected]

Links

  • Sitemap
  • Accessibility
  • Terms & Conditions
  • Privacy Policy

Useful links

  • General Enquiries Form
  • Become A Member Form

© Copyright 2015 Ichthyosis Support Group (ISG) Registered Charity Number: 1142457
Ichthyosis Support Group is a company limited by guarantee | Registered in England and Wales | Company registration number 7609904