Imani Benfell (12) of Wanneroo. Imani has written her first book, Mysteries of Maybelle.
Camera IconImani Benfell (12) of Wanneroo. Imani has written her first book, Mysteries of Maybelle. Credit: Supplied/David Baylis www.communitypix.com.au d494499

Young author’s novel approach to Ehlers-Danlos syndrome

Lucy JarvisWanneroo Times

AT just 12 years old, Imani Benfell is learning the ropes of publishing, managing a website and public speaking after writing a novel to represent people with rare conditions.

The Wanneroo girl has published her first book, Mysteries of Maybelle, which features a character with her condition Ehlers-Danlos syndrome.

“Representation matters to youth with invisible illnesses because of how under-represented they are,” Imani said.

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“People think we can’t do things as well as other people and I want to feel included and represented in my own way.

“I started when I was 10; the chapters started off as short stories.”

Imani Benfell wrote a novel to represent people with rare conditions.
Camera IconImani Benfell wrote a novel to represent people with rare conditions. Credit: Supplied/Supplied

After a few people who read the stories suggested she turn it into a book, Imani took on the challenge.

“At my age it’s very hard to get a book published,” she said.

“I decided to self-publish and learnt the process for myself. It’s very hard and it takes a lot of public speaking.

“I’ve learnt a few other tricks like social media. The website was one of the hardest parts – it was a bit of playing around to get the website up.”

Every month she chooses a charity to give part proceeds of book sales, and July’s recipient will be Arthritis and Osteoporosis WA, which also provides support for people with Ehlers-Danlos syndrome.

While the book is written for seven to 15-year-olds, Imani said a few adults had liked it too.

“I already started writing the second book, which is the sequel to this one,” she said.

The Year 9 student is home schooled, which gives her greater flexibility dealing with pain from her condition, as well as migraines and chronic fatigue syndrome.

In days when she can’t get out of bed, reading helps her get lost in another world.

The condition is genetic, passed down from her mother who was diagnosed when she was 30.

She enjoys being involved in CoastCare, Scouts, drawing and writing.

Visit www.imanitheauthor.com to order the $12 book, with $1 from each copy sold donated to charity.

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Camera IconImage Credit: Supplied/Supplied

What is Ehlers-Danlos syndrome or EDS?

According to the Ehlers-Danlos Society, these syndromes are a group of connective tissue disorders that can be inherited and are varied in how they affect the body and in their genetic causes.

The 13 subtypes are generally characterised by joint hypermobility, or joints that stretch further than normal, skin hyperextensibility – skin that can be stretched further than normal – and tissue fragility.

Symptoms can include loose or unstable joints which are prone to frequent dislocations and/or subluxations, joint pain, hyperextensible joints (they move beyond the joint’s normal range) and early onset of osteoarthritis.

People who are affected can also have soft, velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily; severe scarring; slow and poor wound healing; and development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

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