For all 20 years of her short life, Saarah Ahmed battled kyphoscoliotic Ehlers-Danlos syndrome (kEDS). Here, her mother, Shefaly Begum, explains how Saarah intended to use her platform as a Miss Universe GB contestant to improve the lives of others affected by rare conditions. Today, the foundation set up in Saarah’s name is working towards delivering Saarah’s vision of a society that is inclusive of people with visible and invisible disabilities

By Geoff Case

Saarah’s diagnostic journey

Saarah was born in 2000 with a slight scoliosis (a curvature to the spine), which led to an initial misdiagnosis of congenital muscular dystrophy. Four and half years later, a muscle biopsy brought the correct diagnosis of kyphoscoliotic Ehlers-Danlos syndrome (kEDS).

With kEDS came an enormous range of health challenges for Saarah: severe hypotonia (muscle weakness) leading to daily dislocations, loose bones, very soft skin that could be bruised, cut or torn easily, vision problems, fragile arteries, low bone density, ulcerative colitis, mast cell activation syndrome, atlantoaxial instability, Chiari malformation, and cardiovascular issues including mitral valve prolapse, tachycardia, bradycardia and postural tachycardia syndrome (PoTS).

Miss Universe GB

Saarah’s gastrointestinal issues began in the middle of November 2019 with abdominal cramps and blood loss. She was admitted to hospital and would stay for six days. Her symptoms led to a diagnosis of colitis, for which she was prescribed antibiotics. A colonoscopy would ordinarily have been performed to explore her condition further, but this was complicated by Saarah’s symptoms and by her soft skin. Saarah was referred for an appointment with a gastroenterologist, but an 18-month delay followed, a wait lengthened by the pandemic. 

Despite her challenging symptoms, Saarah was inspired to enter the Miss Universe GB competition, and she pushed herself hard towards her goal of taking part. The first step was an initial interview in March 2020 in Leeds, more than 120 miles away from her home in Carlisle. The journey itself was a formidable obstacle given the state of Saarah’s health at the time. 

In her interview Saarah explained how she wanted to use the Miss Universe GB competition as a platform to raise awareness about the ordeals faced by people with disabilities, whether visible or invisible. She wanted people (including medical staff) to understand that a chronic condition does not only impact physical health but also affects mental health and can lead to societal exclusion and loneliness. She wanted to highlight how people with EDS and other hidden disabilities faced additional obstacles as they navigate the medical system and society:

“The way I look is just the tip of the iceberg; beneath the iceberg is where all the pain and suffering is. Just because somebody can walk a little on the good days or looks okay on the outside does not mean their illness is non-existent. Invisible illnesses are very much real and disabling.”

Saarah’s physical beauty was clearly visible—and she certainly stood out in a crowd at six feet tall—but her family and friends also saw her bravery, intelligence and determination. Her ambition was to be a neuroscientist so that she could develop treatments for people with neurological issues, and this—like her motivation to compete in Miss Universe GB—was inspired by her own mixed experiences of medical care. 

Saarah was concerned most of all about the quality of communication she had seen from healthcare professionals. Shefaly says specialists always seemed shocked by the complexity of Saarah’s multiple conditions and lacked the confidence to support her, often giving out piles of handouts rather than lending an ear to her individual experience of a condition. Shefaly also believes that there was too much compartmentalisation within her daughter’s care—specialists did not really appreciate the bigger picture. The telephone consultations that became standard during the pandemic worked against Saarah too: “I believe it is really important to actually see the patient to know what exactly is going on with them. For Saarah, telephone consultations were very difficult.” 

“Listening to Saarah and finding out how EDS was affecting her was the most important thing they could have done.”

The first operation to straighten Saarah’s spine by fusing her vertebrae took place in 2014, by which time the curvature had reached 97 degrees. The C1 and C2 vertebrae were left unfused, and over time Saarah’s neck slowly bent, causing neurological pain. She was given hope there could be a surgical resolution of this, but in December 2020 after a two-year wait, Saarah was told there was nothing that could be done. She was heartbroken. Her mother saw Saarah’s sense of self-worth plummet and remembers her saying “this is my life now. Nobody knows what it’s like for me because they don’t understand my condition and they don’t know what to do with me and how to treat me. I am so alone and one day I’ll die because the healthcare professionals are not educated about my condition.”

When Saarah’s gastrointestinal issues worsened in 2019, she was told that an outpatient appointment would be made within six weeks. Saarah waited but no appointment came, and suddenly it was lockdown, a particularly tough period for many patients with rare diseases. Saarah chased her GP, but to no avail. “Her referral was communicated to three different gastroenterologists in telephone consultations, but none of them was knowledgeable about her condition. 

Saarah asked for a scan with a capsule imaging system to get around the need for a colonoscopy but never received an appointment. Perhaps if she had, the root cause of the issues might have been found.” After all, Shefaly says, when Saarah attended accident and emergency in 2021, she was given a battery of tests including MRI, CT and ultrasound scans. “Why wasn’t she given this attention earlier? By that time it was too late for her.” 

Shefaly relates this delay to the simple message articulated by the EDS Society: “Early treatment saves lives”. Shefaly also says that doctors didn’t listen to Saarah when she suspected that she had PoTS. “Be more mobile and drink more water” she was told. Yet later, she was diagnosed with the same condition. 

In 2019, when Saarah was admitted to hospital, Shefaly was allowed to stay to support her with her personal care. But when Saarah’s condition deteriorated again in 2020, the nurses had to enforce the COVID-19 restrictions, saying Saarah would have to stay alone. The family explained how Saarah’s limited mobility (from her fused spine) and her bone dislocations meant she needed extra support when being helped in and out of bed. Despite the warning, Saarah’s bones dislocated when nurses supported her to go to the toilet. 

Shefaly says the nurses knew nothing about EDS and had to use Google to learn about it. Experiencing these events, Saarah became exceedingly anxious about staying in the ward and decided to discharge herself. Shefaly wishes the family had been listened to here and an exception made as Saarah was completely dependent on the care that her parents had become expert at giving. 

Saarah was scared to return to hospital, even as her gastrointestinal issues deteriorated in early 2021. An emergency admission to hospital in late March brought a diagnosis of autoimmune hepatitis and cirrhosis—not previously associated with kEDS. Tragically, Saarah died on 13 April 2021.

Saarah’s Foundation—a fitting legacy to a wonderful young woman

Saarah’s aim as an advocate was to reveal how difficult it is for people with EDS or hidden disabilities, such as autism or neurological disorders, to engage with the medical system—and society itself. Saarah struggled with day-to-day activities that most people take for granted, like outings and trips away, because of the challenges of travelling and because of the lack of truly accessible facilities. “With so few places being truly accessible, families affected by chronic conditions often wonder whether travelling anywhere is worth it,” Shefaly says. 

Saarah dreamed of starting a support group with a respite facility tailored to patients’ needs. This, she felt, would make people like her feel more included in society. Now, Saarah’s Foundation aims to turn her dream into a reality. Its first objective is to raise £8,500 so 12 families can receive respite care in the beautiful surroundings of the Lake District and enjoy a social gathering.

“The foundation will contribute to the cost of attending so families can get out of the house and leave their worries behind for a while. We want to create a sense of community and help unify people with disabilities, whether they are visible or invisible. We want them to know they are not alone, because that is what Saarah wanted.”

Several hundred pounds have already been raised. The first fundraising event was in November 2021, where Saarah was honoured posthumously with an award from the News & Star newspaper in Cumbria.

Saarah planned to write a children’s book based on her experiences of what it feels like when you are different. In the manuscript she wrote on her iPad, she explains how she didn’t like her wheelchair at first because it embarrassed her and isolated her from her peers. Other children would race ahead, leaving her feeling lonely and different, accompanied only by her adult care assistant. Similarly, in the dinner hall other children would tuck into their food while she relied on her care assistant to open packets of crisps or cut her food so her fingers wouldn’t dislocate. Saarah wanted her book to educate children about how lonely it can be to be different and to show children with differences that, actually, they are not alone. RARE Revolution looks forward to sharing further details soon.

For more information about EDS, please visit: ehlers-danlos.com

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