GENFIT : témoignage patiente ACLF au Uk

kadmos

21 oct. 2024 •13:37

https://www.itv.com/news/anglia/2024-10-18/liver-failure-sufferer-owes-life-to-c hange-in-transplant-guidance
A mother says she would have died from liver failure without a world-first change in NHS guidelines to prioritise those needing transplants.

In the past, patients of acute-on-chronic-liver failure (ACLF) like Sunita Men Bhuyan from Colchester had been considered too ill to be eligible or died before a donor could be found.

A change in NHS guidance, the first approach of its kind worldwide, means those with ACLF are now being prioritised for transplants, with the success of the change meaning it is now being considered by other countries.

A study published in the scientific journal Lancet Regional Health Europe showed that when patients were prioritised, 77% of the 42 who received a transplant were still alive a year later. All 10 people who did not receive transplants died within 13 days.

Ms Men Bhuyan was one of the patients who benefitted from the change in guidance after several months in hospital due to liver failure.

“I could feel that something was not right," she said. "And it was very early in the morning so I woke my husband up and said 'I don’t think I feel well' and he just took one look at me and said 'No, you don’t look well at all'.

“Things got so bad they had to put me into an induced coma and after that I went into a multiple organ failure.”

Sunita Men Bhuyan in hospital.
Sunita Men Bhuyan says she owes her life to the change in guidance on liver transplants.
Credit: ITV News Anglia
Her only chance of survival was a transplant and she received one within just three and a half weeks, so she is now on the road to recovery and walking independently.

ACLF occurs when someone with a long term liver disease quickly suffers organ failure and can affect people of any age, but is often seen in adults between the ages of 39 and 52.

The NHS began prioritising the patients in 2021 and it became standard practice at the end of 2023.

Ms Men Bhuyan said: “I wouldn't be here today. My doctors told me straight, you know, people like me, if we were not prioritised.
“You know that you are living your life only because this stranger, this kind person, during their lifetime they had thought about registering for organ donation and they probably didn’t even realise how they’d change somebody’s life.”

Prof William Bernal, who worked with other clinicians to deliver the pilot, said: “As a doctor working in a liver intensive care unit I was used to seeing the devastating impact of this condition.

"It was truly heartbreaking to see young people come into the unit with multiple organ failure and as a doctor have very few options to keep them alive.

“These patients now have access to a lifesaving therapy for the first time.

“There is an urgent clinical need for interventions to improve survival for people with this disease, which causes many of the two million deaths from chronic liver disease world-wide each year.”