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Parents

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!

Help boost their Confidence with our friends Jen and Duncan

Jen Campbell, is a best-selling author, book reviewer and editor. She has written ten books for both adults and children: nonfiction, poetry, short stories and picture books. She reviews books on BBC Radio, runs a podcast called BOOKS WITH JEN, and a Youtube channel where she talks about books, fairy tales and disability.

Jen was born with EEC, a syndrome of Ectodermal Dysplasia. As part of her job she runs writing workshops where she will teach how to write short stories, poetry and creative nonfiction. She has a passion for raising up Own Voices writing; “as we know, representation is so important”.

If anyone reading this, who is affected by Ectodermal Dysplasia, is interested in writing and learning more about that, Jen is offering FREE writing workshops for anyone aged 14+ with ED (this includes adults, too!). The workshops offer help with how to structure short stories, how to write science fiction, how to experiment with magical realism, how to use space on a page when writing poetry — lots of different things. You get to pick what you want to learn about! The workshops are fun and are for those of you who are either brand new to writing or have been writing for a while.

‘Finish The Story’ – Download

You can find out more about Jen here: www.jen-campbell.co.uk

Duncan William is a professional magician who performs live and virtual shows but also teaches children magic. Learning magic has been shown to improve, dexterity, self-confidence, and self-esteem, which we think is extremely beneficial for children affected with Ectodermal Dysplasia. Find out more here: https://www.magicduncan.co.uk

We want to thank Jen and Duncan for getting involved with the ED Society and we hope you and your family find their resources useful.  Hopefully Jen and Duncan will be joining us at our Christmas Party in 2022 – see you there!

If you would like to share your experiences of living with Ectodermal Dysplasia, we would be delighted to put your article in our newsletter.

We are very lucky to have members who have set up their own blogs, sharing their stories and journeys that they face living with ED.  If you have your own blog and are happy to share it with us on our website, please let us know!

Take a look at the following blogs;

www.roundpegfestivalmama.com

www.edkeepingitcoolblog.wordpress.com

www.niamhwoods.wordpress.com

www.alongcamepoppy.com

We hope that our website will provide all the help, support and information you are seeking. If you cannot find the information you are looking for, please email us or telephone us direct on 01242 261332.