Starting nursery or school will be one of the biggest steps that your child will take.
The ED Society has a School Health Care Plan for use in nurseries, schools, colleges, universities, etc. This document explains in detail how a child is affected by Ectodermal Dysplasia and the procedures that should be put in place to ensure their safety and to maximize of their education.
Download our ED School Health Care Plan here.
Update due to Covid-19
We have put together the letter below, which we suggest is kept with your child’s current school care plan and will need to be discussed with their school and teachers. The letter will help to remind staff that all methods of cooling should be carried out as normal, before calling parents and sending the child home due to concerns over Covid-19.
When your child is starting nursery or school for the first time or changing school, it is important that all staff (including meal time staff) are aware of Ectodermal Dysplasia and the impact it has on your child. The ED Society can provide information to help you when talking to Head teachers and Education Authorities.
Encourage your child to join in activities such as swimming, cubs/brownies, gymnastics and football; in fact, anything and everything they want to. Confidence is a very valuable asset and Ectodermal Dysplasia should not prevent children from doing anything providing the right provisions have been made.
At school, when they begin to overheat, they may start to lose concentration to the extent that they will be unable to follow the teaching in a lesson; they will be listening to the teacher but unable to absorb the information. They will then dip in and out of concentration until they eventually can no longer follow the teaching and may become bored and disruptive, fiddling with pens, clothing, etc., and may eventually be sent out of the classroom. They will not realise or understand why this is happening and therefore will not know why they have been sent out.
In senior school it is a good idea to use an Student Information Card system which stipulates the student’s name and medical issue on the one side and the permissions granted on the other. The pupil is then able to produce the card to any teacher, tutor, staff, dinner staff, supply staff, etc., to help them explain their medical condition and the permissions granted.