Parents and Carers
Being a parent and caring for a child can bring great joy and happiness as well as challenges to deal with. No matter how many books, parenting forums, and articles you read, nothing can completely prepare you for becoming a parent – yet parents are the key to giving children a happy and stable childhood.
We know only too well what it is like to receive the initial diagnosis of Ectodermal Dysplasia, to be on an emotional rollercoaster, to experience the feelings of guilt, fear and anxiety and know the difficulties coping with the day to day management of Ectodermal Dysplasia.
Learning anything new is often challenging and this is especially true when you are trying to learn about a complex medical condition. The words and concepts may be unfamiliar. Some of the details can be troubling. It can be difficult to know what to do with all the information you gather.
Diana Perry, our CEO, has first-hand experience of this; she has two boys who are affected by Ectodermal Dysplasia who have successfully completed school and university. Diana remembers clearly the first years of their lives and the difficulties Ectodermal Dysplasia presented to her and that of her family. She is happy to chat with you on a personal level as well as from her experience from running the ED Society – no questions are too small, too large or too silly for her – she has been there too!
Talking to your child about ectodermal dysplasia can feel daunting. This article, Explaining ED to my Child, looks at how simple, honest conversations from an early age can help children understand themselves and build a positive self-image.
ED Stories
If you would like to share your experiences of living with Ectodermal Dysplasia, we would be delighted to share your article in our newsletter and on our website. We are very lucky to have members of our ED community who have taken the time to share their experiences of living with ED. Head over to our Stories page to have a read.
The Visible Difference Parenting Toolkit
The Visible Difference Parenting Toolkit is a new self-guided e-book created to support parents and carers of children with visible differences. Developed by researchers at the Centre for Appearance Research, with input from parents with lived experience and clinicians, the toolkit is designed to improve the wellbeing of families navigating these challenges.
How was it developed?
To ensure the toolkit was effective and truly useful, an evaluation was carried out through online surveys and interviews with parents and carers. Thank you to everyone who took part in the research, the charities who shared the study, and those who contributed to the development of this valuable resource.
What did the findings show?
The evaluation results show that the Parenting Toolkit is effective in promoting psychological wellbeing among parents and carers of children with visible differences.
What does the toolkit offer?
The e-book provides a wide range of support, including:
- Practical advice for supporting your child and caring for yourself
- Guidance on tricky situations – from teasing and bullying to healthcare appointments
- Interactive activities based on Acceptance and Commitment Therapy principles, to help manage thoughts, feelings, and everyday challenges.
A collaborative resource
The toolkit is based on years of research with parents and professionals. We are proud to share that this work includes contributions from one of our Medical Advisory Board members, Maia Thornton, PhD, alongside input from our CEO, Diana Perry.
We were delighted to see this brilliant resource showcased at our ICED conference in Birmingham (June 2025), and we are thrilled that it is now available to our ED community.
Access the Toolkit
The Visible Difference Parenting Toolkit is available to access and download for free via the Visible Difference Support Hub.
