What to do before your child enters school…

  • Educate your child about their skin condition
  • Contact your child’s school the year before they enter so they can be prepared to handle your child (educate staff, medical plan, AC in classrooms, etc.)
  • Early Intervention services will assist with any developmental delays present


  • Send home notes to other parents in class/school to educate them about ichthyosis
  • Ask to speak to parents at Back-to-School Night or orientation about ichthyosis; this will alleviate any questions/concerns they may have (Is it contagious?  Were they in a fire?)  etc.
  • If child is old enough, allow them to talk to classmates about ichthyosis.  Children will wonder why child has lotion on each day.  Simple answers will satisfy young ones
  • Ask about outdoor playtime-is there a shaded area?  If too hot, where will your child go?  Are all classrooms air conditioned? 

Elementary School

  • Bring your child to visit new school and staff before the year starts
  • Discuss child’s special needs with principal, nurse, teacher and psychologist
  • Educate your child’s class about ichthyosis-who will do this?  Parent, teacher, child, psychologist?
  • Provide school with copy of FIRST’s publication Ichthyosis: A Guide for Teachers
  • 504 Plan is a good idea
  • Lists specifics about your child’s medical needs
  • What is done when child gets too hot for gym? (frequent breaks, sunglasses, hats, cooling vest, etc.)
  • He/she may bring a water bottle to all classes
  • Hat allowed in school due to loss of hair
  • Recess?
  • Child must report to nurse to apply creams/lotions whenever necessary (who will apply them-child or nurse?)
  • Air conditioners/fans must be in classrooms
  • Special transportation if necessary
  • IEP
  • Necessary if your child requires special accommodations for educational reasons
  • OT/PT/Speech
  • School trips/Activities
  • Distance of trip?  Bus too hot?  Lotions on trip?  Chaperoned by??
  • Field Day-how can my child participate without overheating? 
  • Graduation/Moving-up ceremonies-location?  AC? 

Middle School

  • Transitioning to new school
  • Meet with new principal and nurse to discuss and educate
  • Meet/email teachers; communication is key
  • New children may enter from other schools-don’t know about ichthyosis
  • Children change classes- will all rooms have AC?
  • Self-esteem issues arise due to peer pressure
  • 504 Plan/IEP continue-might have to add to plan
  • Seek professional help for your child if needed
  • Middle School is tough for everyone, but ichthyosis adds to it
  • Trips/Activities
  • Encourage child to join clubs; get involved
  • Rough years

High School

  • Transitioning to new school
  • Meet with new principal and nurse to discuss and educate
  • Meet/E-mail teachers; communication is key
  • Encourage child to join clubs; get involved
  • By now, most children are sure of who they are and it is easier to be “one of the group”
  • 504 Plan/IEP continue-might have to add to plan
  • Trips/Activities


  • Stay involved (volunteer, class parent, etc.)
  • Talk to your child, discuss their day, ask how others react to them
  • Point out your child’s strengths
  • Be prepared for rough days!  You will hear: I hate my skin!  This is YOUR fault!  I don’t like what I look like!  I want normal skin! etc.
  • Talk to others who have already walked in your shoes
  • Contact FIRST for resources to help (DVDs, publications)

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