We've compiled a list of books written by members of the EB community. How many have you read?

Our listed books are written by some of our talented members, which we are keen to share so you can find books that may be of interest to you. Please note that we do not necessarily recommend these books, and some may not be suitable for all audiences.

Please also be aware that some of these books for adults include content that some may find distressing.

We'd love to hear your reviews of these books, and if you think any books are missing from this list. Please get in touch at [email protected] and let us know.

 

Contents:

• Children's books
• Adult books

 

Children's books

 

Debra the Zebra has a birthday

A book for children aged 2-7 with EB and their families, playgroups and schools.

"This story is about friendship, finding solutions, and playing to your strengths even if you live with a medical condition like EB and some aspects of day-to-day life are challenging. We hope you enjoy reading it and find it a useful resource to help young children, schools and extended family better understand EB."

You can read Debra the Zebra online or please get in touch with our Membership team if you would like us to send you a copy.

 

Binky’s Time to Fly

By Sharmila Collins

"When Binky turns from caterpillar to butterfly, it's a disaster! His wings won't work and poor Binky can't fly. Luckily, the spiders, silkworms and bees come to his aid. Together they work out how to give Binky a pair of bright, strong wings."

 

Buy on Amazon

 

 

Butterflies Keep Flying

By Ali Pfautz 

"Sometimes, the gentle butterfly imagines what it might be like to be other creatures...bigger, stronger, louder animals; those who don’t have fragile wings, who don’t have to fly around all day. But when she stops daydreaming and starts thinking about how her wings carry her through life's challenges, the butterfly reminds herself of the incredible strength within her colorful, breakable wings. This tender story was inspired by the courageous spirit of the "butterfly children," the boys and girls battling a rare disease known as epidermolysis bullosa, EB."

 

Buy on Amazon

 

 

Where are we going?

By Vie Portland

"On the surface, 'Where are we going?' is a book is about imagination. There is more beyond that, though.

In fiction generally, but especially in children's fiction, in the very small percentage of books that have a child with a disability as a main character, the story is, nearly always, about their disability. This can be a contributing factor to how many of us still see people with disabilities as "other"; if the stories are about their disability, we often miss who they are first: a person. This book is designed to be a stepping stone to helping children see that people with disabilities can, and do, live rich and wonderful lives, in reality and in their imaginations. The hope is that this book plays a small part of encouraging everyone to accept others, not just because of their differences, but more because we have more in common than that which makes us different."

 

Buy on Amazon

 

Who am I?

By Vie Portland 

"In Who Am I? Emily and her mum imaginatively explore who she is.

In a study done in 2020/21, it was found that most children wouldn't make friends with someone who looked different to them; this could be because of their size, their colour, or their disability. It's not too surprising, really. Have a think about the villains in films and books; what do they look like? Many of them are fat, or bald, disabled or disfigured. It highlights the differences we have.

And that's why, in my Emily stories, the stories aren't about her disability, about how she looks different, because I want readers to see that we all have far more in common than that which makes us different; I want readers to see that, when we accept and celebrate our differences, our worlds open up to so much more joy, to so many more experiences. Surely that's a better way to be?"

  

Buy on Amazon

  

All About Me 

By Dawn James

An interactive colouring book story about EB from Birmingham Children’s Hospital.

Please get in touch with our Membership team if you would like us to send you a copy.

 

Adult books

 

Extraordinary Butterflies: Stories of resilience and hope from the EB community

Compiled by Vie Portland

"In this book are stories from the experts: the people that live with EB. Some of us in here have the condition, others are the parents, partners, or siblings of someone living with the condition; we all have something important to share. And we would love to share these stories with you, whether you are new to the EB community, you are part of the community, or you just want to know more about us.

Our skin is likened to the fragility of a butterfly’s wing, so the butterfly has become a symbol for us. We live with EB. We are Extraordinary Butterflies."

 

Buy on Amazon

 

The life of Heather May - Living with recessive dystrophic EB

By Wendy Skerry

"Heather was born at 11.58 am. Apparently, I had the perfect labour – I’m really not sure that any mother would agree with that!

But joy turned to worry very quickly. Heather was taken to the Special Care Baby Unit. I didn't see her until two hours later, and by then she had bandages on her hand and leg. They later showed me photos: her hand and leg looked like raw liver.

I was once told that everyone has a book in them. I never believed this until now and my story is not fiction but that of my wonderful daughter, Heather."

 

Buy on Amazon

 

My Life in His Paws: The Story of Ted and How He saved Me

By Wendy Hilling

"This is the story of Wendy and her incredible bravery living with a disability and battling against the odds. It's also the story of Ted, the extraordinary assistance dog, and the unique relationship between a human and animal and the extraordinary things animals are capable of."

 

Buy on Amazon

 

 

 

La Vie est Belle: Learning to live hopefully ever after

By Vie Portland

"From awful beginnings, to more joyful times, Vie shares her story and gives gentle guidance to the reader on how to live a happier, kinder, more confident life, helping them see how wonderful they are, just as they are."

 

Buy on Amazon