A bereaved mother has written a children's book raising awareness of Ehlers-Danlos Syndrome (EDS), in memory of her beloved daughter.
Shefaly Begum introduced Saarah's Princess Throne at the Bitts Park Show and Tell event on May 19, coinciding with the month dedicated to raising awareness about Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder.
The book honours her daughter, a Carlisle psychology student and former Miss Universe GB finalist, Saarah Ahmed, whose dream was to educate people about the rare connective tissue disorder.
Saraah passed away at the age of 20 in 2021 after a lifelong battle with the condition.
"EDS is a group of inherited connective tissue disorders, affecting skin, tendons, ligaments, blood vessels, internal organs and bones,” Shefaly explained.
"The condition affects a person from mild to life-threatening.
"We need more healthcare professionals and nurses to educate more about the condition.
"Often misunderstood by thinking it's in the patient's mind but in reality, the condition is life-threatening if it is not treated earlier.
"Early treatment saves lives.
"Sadly Saarah did not get the benefit of being treated earlier because of the lockdown delays, causing her death.
"No one person is the same. The condition affects the whole body.
"There are 13 subtypes, my daughter had a very rare type of EDS type 6a caused by mutation of the Plod1gene and suffered from autoimmune disorders, scoliosis, severe chronic pain, postural tachycardia syndrome, and bone dislocations every day.
"It affected her mental health very much. It's like the tip of the iceberg you may look okay from outside but you're not okay," she said.
Despite living with these challenges since 2005, Saarah was determined to raise awareness about EDS and educate others, especially about living with disabilities.
“Ever since she was born she had the condition but in those days it was hard to diagnose and was not explained properly.
"There were limited sources and help unlike now more awareness is helping to educate.
"Many patients who had EDS, didn't know they had it and been diagnosed late.
"Often been told 'pain' was growing pain," Shefaly said.
Saarah’s Princess Throne, published by Trails of Tales that Travel and illustrated by Michelle Russell and Krista Whelpdale, aims to educate young readers about disabilities, both visible and invisible through stories throughout the Brook Street Primary School pupil’s lifetime.
It also features a powerful handwritten poem by Saraah herself.
“The book itself is about Saraah as a child what it was like and the struggles she faced," Shefaly said.
“The moral of the book is the wheelchair is a good thing and a show of strength.
“It is to help children understand about disabilities, whether they be or invisible not.”
Funds raised from the book will support the larger EDS Society and Saarah’s foundation, assisting others in similar positions and furthering research.
Michelle Russell, who helped publish and illustrate the book, said the book is a “legacy to Saraah and the strong person she was”.
“It’s amazing, the book will be so inspirational to people," she said.
“I’ve learned a lot about EDS. At the event, it was really fantastic to raise that awareness. Chatting to people. It’s amazing how many people are impacted by elements of this syndrome.
“For Shefaly to have that platform on Sunday to share her book was just perfect,” she said.
Saraah’s Princess Throne is available to buy via Amazon. You can also follow Saraah’s foundation on Instagram via saraahs_foundation
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