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Case study: 'Everybody's Different'

Explaining ectodermal dysplasia to children aged four and above

Published: 13 Jan 2020

Everybody's Different

Client: Ectodermal Dysplasia Society

Agency: Envision Pharma Group

Campaign: 'Everybody's Different'

Timescale: N/A

A quick look

The Ectodermal Dysplasias (ED) are rare complex genetic disorders affecting the development or function of the teeth, hair, nails, sweat glands and other parts of the body. The Ectodermal Dysplasia Society (ED Society) is a charity dedicated to improving the health and well-being of people with the disorder.

Children with the disorder have an inability to sweat due to absent or reduced sweat glands, and therefore can overheat at any time of year due to environmental temperatures or an impending infection, the management of which can be restrictive. Also the condition has obvious physical symptoms, and children are likely to look different in a variety of ways.

Envision Pharma Group (EPG), in collaboration with the ED Society, has written and designed a dual-purpose patient education book for children that both explains the condition to children affected by ED, and creates empathy and positive bystander behaviour to tackle the commonly associated problem of bullying.The book has received acclaim from patients and carers globally.

Challenge

In line with the main objectives of the EDS, the primary challenge was to contribute to improving the health and well-being
of children affected by ED, and to directly communicate with a child living with an ED disorder, and/or with all children who interact with the child. Children with ED need ongoing support as they are often subjected to bullying or exclusion.

It was apparent that existing information available for lay audiences on the subject matter contained a large volume of in-depth information, and was written for older individuals/parent audiences. The existing literature was also primarily medically focused and did not deal with issues surrounding the social impact on child patients, and nor did it promote empathy or positive discussion.

The clear challenge was to help explain the condition to children affected by ED, to educate their peers and to provide an educational tool to help normalise perceptions of the condition, thereby proactively reducing any associated discrimination. This in turn leads to improved self-perception, self-esteem and improved inclusion outcomes for children who happen to be affected by ED. The project was to have a global reach.

Solution

EPG’s solution was to write an English language education piece that both details ED conditions and helps create empathy and positive peer behaviour. Child-friendly language and carefully constructed examples were used to raise engagement levels with children. Input from parents of children affected by ED and also children/teachers from a local primary school (previously unaware of the condition) was added to refine the messaging and tone of the content.

The theme, ‘Everybody’s Different’, was developed to broadly celebrate everyone’s differences, while also educating people about the symptoms of ED. Normalising children’s differences is crucial in addressing the objective of reducing bullying for those affected by ED (and also, hopefully, for those not affected by ED).

The text is medically accurate and provides details of how children affected by ED may differ visually and how ED may affect them, showing what children affected by ED are sometimes unable to do. Designed and written for children aged four and above, the patient education booklet directly suggests a more positive behaviour for preventing and resolving bullying that bystanders can adopt.

Results

Upbeat and accessible, Everybody’s Different explains the complex nature of ED to children in a way that engages them and is easy to understand. It explores the symptoms and encourages non-patient audiences to consider the emotional impact on those affected by the condition.

This project was driven by EPG’s ongoing commitment to providing accurate, understandable and accessible content to lay audiences, with great results. The book was printed and distributed on request to patients and their parents/carers around
the world. Feedback has provided deep insight into the emotional toll this condition can take, and the value in having a resource available to positively influence social factors that have a direct impact on a child’s life.

The book has received universal praise from the international ED community so far, affirming that a progressive, accessible and engaging piece has been created to aid positive outcomes for patients.

“The joy was evident on his 10th birthday when he got information on who he is and why he is like that. He was so excited that he wanted the whole world to know about ED. From the bottom of my heart I say thank you to the Society.”

“I need this. Kids in my son’s class (he’s in 2nd grade) have been picking on him calling him shark boy and vampire boy. I think I’ll send one into the school.”

“I have a copy of this book and the adult version explaining Hereditary Ectodermal Dysplasia. Both are really valuable books to have and share with people who come into contact with your child.”

Client verdict

Diana Perry, Chief Executive of the ED Society: “We love our book,‘Everybody’s Different’, and we are forever grateful to Envision Pharma Group who helped us to develop it. The enthusiastic feedback received from young people with ED and their families says it all.”

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