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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!

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.