A NEW foundation dedicated to tackling “hidden disability” will be the legacy of a former Miss Universe Great Britain finalist from Carlisle whose life was taken by a rare medical condition.

Psychology student Saarah Ahemed was just 20 years old when she died in a Newcastle hospital as a result of Ehlers-Danlos Syndrome (EDS), an invisible disability which had blighted her life since childhood. Articulate, intelligent, and brave, Saarah dreamed of one day working as a medical research neuroscientist.

Alongside this, she had made it her personal mission to raise public awareness of hidden disabilities such as EDS – a connective tissue disorder – and she had hoped to use her public profile through the Miss Universe contest to highlight the issue.

Tragically, her work was cut short by her death on April 13.

Supported by her heartbroken family, the Carlisle based home education school which worked with Saarah – helping her achieve A-grades in psychology, sociology and maths – has launched Saarah’s Foundation, designed to help other young people who are battling hidden disability.

The Foundation’s aim is twofold: to raise funds to support local families, providing facilities and respite breaks, with outdoor adventure; and secondly to raise awareness of hidden disabilities such as EDS.

The Foundation was launched last month at an event in Carlisle which celebrated Saarah’s short but remarkable life. Eden Education director Katrina Hewgill, whose own daughter has EDS, said: “We wanted to share Saarah’s message.

“One of the issues people with invisible disabilities have is that they often spend a lot time in a bed, staring out of a window, and never being a part of life.

“We want to allow those children to have a respite break so we can send them on holidays with local adventure activities, bringing joy to their lives.

“We need to have a specialist team to support those children while they’re away. Saarah’s family have a grander long-term vision: they want to open up a centre dedicated to supporting children with hidden disability.

“My daughter has EDS, so it’s an issue close to my heart. From the outside, Saarah was an absolute beauty queen; you’d think there was nothing wrong. But behind closed doors, she suffered daily, even with minor tasks. People have to fight hidden battles.

“They feel their condition is invisible and they feel invisible because of it.”

Eden Education aims to create training courses for the NHS, spelling out what challenges people like Saarah face and what specialist support they need. Asked to describe Saarah, Katrina said: “She was amazing: strong, courageous, bright, and passionate.”

Saarah’s parents are fully behind the Foundation.

Her mum Shefaly Begum said EDS often involves multiple medical issues, such as extreme pain, heart problems and frequent joint dislocations. A more detailed account of Saarah's life can be found in this link.

“Saarah’s condition meant her back was ‘fused’ from the top of her neck to her pelvis. She faced problems because people couldn’t see her disability.

“There’s a need to educate people – including in the NHS – about EDS and other hidden or rare conditions. One reason Saarah wanted to be a neuroscientist was so she could help educate others, including clinicians, about such conditions. She was young but she was also wise. The Foundation will be her legacy.

“It was something she wanted to do because the problem is still there.

Saarah encountered a lot of difficulties in her life, especially attending hospitals. Because her back was fully fused, she had limited mobility. She couldn’t even bend down.”

Saarah’s brother Aminur, 25, said: “People see what’s on the outside but as a serious contender in Miss Universe Saarah wanted to spread her message about hidden disability on a global scale.”

Find out more at the Saarah’s Foundation Gofundme page here; and the condition which affected Saarah at the Ehlers-Danlos Society website.