Ehlers-Danlos Syndrome: Hope for Sheffield woman, 25, after rare illness left her fighting for life each month

But now the inspirational 25-year-old has plenty to smile about – as she has just graduated with a diploma that she fought through pain to obtain, just six weeks after having an operation she hopes will transform her life.

Katie, who came to Sheffield in 2016 as a student, was soon diagnosed with a ‘horrible’ genetic condition, Classical Ehlers-Danlos Syndrome, which left her needing a surgical feeding tube, surgical catheter and a central line directly into her heart.

Then, in December 2019, she contracted a rare type of bacteria, resistant to most antibiotics, which meant that she regularly developed the life-threatening blood infection, sepsis. She was admitted to hospital roughly once a month since 2021 and her family said she went through some horrific experiences.

She said that it was a very scary time. Since April 2021, there had been times when she had been critically ill and did not know if she would make it through. But after she was in hospital over Christmas surgeons suggested a major operation was the best way forward.

And now, she has fresh hope, her Sheffield University diploma, and a new job that several years ago she only dreamed of.

On June 1, she had an operation at Guys Hospital in London to remove her bladder, to stop the infections. Surgeons took the tubes draining urine out of the kidney and created a new route out of the body using a part of her intestines, leading to a bag to collect the waste products.

It followed a major appeal to raise £50,000 for the costs. Katie and her family remain massively grateful to the people who rallied to support a crowdfunding campaign to raise the money. “We were absolutely blown away by the response,” she said.

Two weeks after the operation, Katie was discharged from hospital by medics, who were happy with her progress. And now, she has returned to Sheffield University to pick up her diploma in speech and language therapy, on her graduation day.

She had completed three of the four elements she required for the degree she had originally been studying, and hopes to complete the full degree in a few years.

And Katie already has a job lined up, as a speech and language assistant near her parents’ home in Middlesbrough, the Teeside town where she is currently living with her parents. But she told The Star she hopes to return to Sheffield, a city she says she loves, when her health allows.

Delighted Katie said after picking up her degree that she felt it had been nice for her parents to have a celebration, after all the family had been through in the last few years.

She said: “Six weeks really can make the world of difference. From my first steps after bladder removal to stepping on the stage for graduation, I graduated with a diploma in speech and language therapy from Uni of Sheffield. I can’t actually say quite what this means to me. I loved every single second and I tried for so long to become a speech and language therapist, seven years. I wrote assignments in critical care and completed online placements from my hospital room.”

She said every part of her wanted her degree graduation but after stopping being able to eat, needing a feeding tube, bladder failure, catheters, over 20 episodes of Urosepsis, multiple central line insertions and many tearful appointments with her lecturer, Emma Gregory, she had realised her body couldn’t keep up.

She praised the ‘amazing’ staff in Sheffield University and said: “There are not many places that would have tried so hard for so long to help me make it.

“And I’m happy with that for now. I miss Sheffield so much. I miss my ‘old’ life and I miss the SALT degree. But I look back to 18-year-old homesick me and I hope she is proud. This is not a goodbye Sheffield, just a bye for now.”

Katie told The Star she already had a job, at a hospital in Northallerton, as a speech and language assistant.

But in the long run she hopes to return to Sheffield – although she does not think it would be to one of the city’s hospitals, where she had been a patient.

She said: “I would love to come back to Sheffield, but I have to see if the surgery has worked for a bit longer before I can return to the city. I love all of Sheffield – it feels like a really friendly city, with more of a village vibe to most other cities, but with good shops, a great vibe and great nights out. Then there’s the Peak District so close, and the people. My course friends were the best people ever.”

She said if she is able to return, she thinks she would look for a job in the community or in the city’s schools, rather than the hospitals, as although she had received great treatment from them, she felt it would feel strange after having been an inpatient at the Northern General Hospital in 2019, and spending a lot of time last year as a patient at the Royal Hallamshire Hospital.

In terms of how she now feels, she says pain-wise, she is so much better than the days before the operation.