A YOUNG Carlisle woman whose exceptional beauty and courage in the face of disability helped her become a Miss Universe Great Britain finalist has died.

Despite being just 20-years-old, psychology student Saarah Ahmed had already used her talents and intelligence to begin highlighting Ehler’s Danlos syndrome (EDS), the rare condition which blighted her life.

She died suddenly on Tuesday, April 13.

Her proud mum Shefaly Begum said she wants to tell her daughter’s story to help realise Saarah’s dream of educating people about EDS.

A former Trinity School pupil, studying sociology and psychology A-levels, Saarah was articulate, beautiful and wise - qualities which shone through in February when she made an Youtube video about her condition.

She explained how EDS is a group of inherited connective tissues disorders, affecting skin, tendons, ligaments, blood vessels, internal organs and bones.

“Saarah was determined to raise awareness about hidden disabilities such as EDS,” said Shefaly, of Mallyclose Drive, Harraby. “That’s what motivated her when she became a finalist in Miss Universe Great Britain.

“She was a beautiful person - caring and wise beyond her years. She had so much wisdom. She wanted to go to university to study neurology. She wanted to help other people.

"She was our only daughter and she was our princess.”

Saarah had major surgery as a teenager to correct a spinal curvature. Yet early last year she travelled to Leeds to meet Miss Universe judges - but withdrew because lockdown and health issues.

“If I was to be Miss Universe Great Britain, I’d bring awareness to hidden disabilities, using myself as an example,” she said in her video, filmed in the garden behind her home.

“I’d show the day-to-day struggles we face. I’d like to raise awareness of Ehler’s Danlos syndrome particularly.”

“It’s a connective tissue disorder, resulting in extreme complications. There are 13 different types of EDS and I have Type 6, which is one of the more rare types.

“There are only 15 people living with my condition in the UK. My condition affects every part of my body. Some problems I face are my bones dislocating every day; extreme pain; heart problems; and curvature of the spine and I’ve have many surgeries to correct that.

“Just to get out of bed is a huge struggle for me. Although it will be a very tough journey, I want to prove to everyone that I’m able to do this too.

Paula Abbandonato, director of Miss Universe Great Britain, paid an emotional tribute to Saarah, saying she had made a lasting and hugely postive impact.

“I have organised the Miss Universe Great Britain competition since 2008 and it s not often that I meet a contestant who makes such a lasting impression as Saarah," said Paula.

“She was an incredibly beautiful young woman who turned heads when she walked into a room. What was even more incredible was her determination to use her Miss Universe Great Britain experience to raise awareness of serious illness and disability to help others.

“The pandemic put a stop to Saarah competing last year, but we had every hope that she would return in 2021. Our hearts are broken.

“This world has lost a beautiful woman and a wonderful soul. Our thoughts and prayers go to her family who we know loved and cared for her so much.”

When Saarah became a Miss Universe finalist, she was widely expected to do incredibly well in the contest.

Writing last year, The Angelopedia website said of her: "Saarah Ahmed is one of the finalists at Miss Universe Great Britain 2020 and is emerging as a potential winner. She is 19-years-old and stands tall at 183 cm.

"She is a student of psychology and is one of the youngest but tallest contenders for the title.

"Since she was a little girl, she always wanted to be a beauty pageant queen but believed that she couldn’t but never stopped dreaming about the day when she’ll be able to represent her country at Miss Universe stage.

Being a finalist at Miss Universe Great Britain, Saarah feels that she can bring in the change she needed in the society when she was young.

"She wants to raise awareness about invisible disabilities using herself as an example and show the day to day struggles people like she really faces.

"She also wants to break the stigma seen towards disabled people and show that we can achieve our goals even though its tougher.

"She also talks about the struggles she had to face when she was announced as one of the finalists for the title and how people around her asked her not to participate as she would only let the country down.

"But Saarah’s strong will and determination has helped her to held her head high and proudly say that she is one of the strongest contenders at the competition.

"Saarah is not only an inspiration for the disabled community but for everyone who aspires to be a beauty queen.

"She explains about her condition in which carrying out simple actions like getting out of bed gets difficult for her on some day and when someone like her is trying to prove that she is more than just her condition then everyone should support her.

Find out more at www.ehlers-danlos.com.Saarah leaves her mum, loving father and four brothers.

Saarah passed away at Freeman Hospital in Newcastle having suffered liver failure and severe colitis.

The precise medical reason for her passing is not yet fully known, say her family. She suffered from Kyposcholiotic EDS Type 6. You can watch her video, made in late February to highlight EDS, by clicking here.