Only one in five Belgians know what sepsis is, revealed a study by the market research agency, iVOX, on Friday, World Sepsis Day. In thousands of cases, the lack of knowledge can be a matter of life or death.
Four days after Ilse Malfait (52) received chemotherapy for an aggressive tumour in 2020, she was rushed into surgery due to bowel perforation. When she woke up, she found herself in "terrible pain" but was told everything was normal and that she would be home within the week. "But the week turned into 487 days," explained Malfait, "I got septic shock."
Sepsis refers to when a person's immune system has an extreme response to an infection. It can affect people of any age. In Belgium, around 41,000 people are estimated to develop sepsis every year, according to a 2020 study published in the medical journal The Lancet. For around 7,600 people in the country, this is fatal.
What is sepsis?
Almost 49 million people worldwide are affected by sepsis, a condition that accounts for 20% of global deaths, according to a 2020 study published in the medical journal The Lancet.
The condition occurs when a person’s immune system has an extreme reaction to an infection, according to the World Health Organization (WHO). While typically sepsis is caused by bacterial infections, it can also be due to infections caused by parasites, viruses, or fungi.
Symptoms of sepsis include fevers, confusion, difficulty breathing, body pain, sweaty skin, high heart rates, or low blood pressure. In children, signs of sepsis also often include paleness, feeling cold to the touch, or convulsions, according to the WHO.
The condition can be treated through different methods, including antimicrobials or IV fluids. If not diagnosed or treated early, sepsis can lead to tissue and organ damage, organ failure, or even death.
In Malfait’s case, the condition caused her to lose both her legs and fingers. In addition to the physical consequences, she also experienced significant fatigue, brain fog, and concentration problems.
"When I was home after 16 months, it was tough. I felt alone," recalled Malfait, "I started writing down my story just to process what happened to me. But while I wrote, a lot of questions came up. I wanted answers."
'Vicious cycle'
Through conferences, conversations with medical professionals, stories from sepsis survivors, and experiences with the general public, the underlying issue of sepsis became clear for Malfait: a general lack of knowledge.
"When I told people I had sepsis, they looked at me with question marks in their eyes," Malfait told The Brussels Times.
But the unawareness of the complexity of sepsis is not only reserved for the layperson, it’s also an issue in healthcare. "Sometimes things can go very fast, and sometimes precious hours are being lost because people are not well enough aware or trained to screen for sepsis," said Dr. Erika Vlieghe, an infectious diseases specialist at the Antwerp University Hospital.
Ilse Malfait (red shirt, standing) at a sepsis conference in Paris 2024. Credit: Manuel Gouthière
However, Dr Vlieghe also stresses how other factors complicate sepsis diagnoses in healthcare. An example is how medical professionals are taught mainly to make diagnoses based on the most likely scenario, and the likelihood of encountering septic patients can vary depending on the medical department.
Nonetheless, education is key for Dr Vlieghe: "It's important that people are trained to constantly think, in the back of their minds, when they see a severely ill patient, 'could this be sepsis?'" she said. "but without all of us becoming paranoid."
Similarly, Malfait believes raising awareness of the issue is crucial: "When there is ignorance, the general public doesn't know about sepsis, it’s difficult to find funding for research, there is little research [...] It’s a vicious cycle that has to be broken."
'Wait and See'
Towards the end of 2023, sepsis and Malfait’s story were finally put under the limelight with the release of a VRT documentary and a book.
In response, the then Federal Health Minister, Frank Vandenbroucke, requested a scientific report proposing a national plan to address sepsis, something which had already been urged for by the World Health Organization back in 2017.
The 200-page report, submitted in May 2024 by a team led by Dr Vlieghe, outlines a series of suggestions to ensure early diagnosis, treatment, and even prevention of sepsis. Since the submission of the report, steps have been taken to bring the proposed guidelines to life, with a specialised group set to be appointed to write an implementation plan.
Ilse Malfait (third from the left) and others presenting the national plan report.
However, as the formation of the new Federal Government is still under negotiations, it is unclear when exactly action will be taken. "We first have to have a new [Federal] government and then hopefully they agree or also know that sepsis is a problem. But there are a lot of healthcare issues," said Malfait.
Though Malfait says she remains "hopeful" for sepsis to be addressed at a national level, she does not dismiss the hurdles to implementing the national plan: "Am I optimistic? Let's say: wait and see."
More information about sepsis and how to support related initiatives can be found on the Sepsible website.
The iVOX online survey was conducted between 28 August and 2 September 2024. It included data from a representative sample of 2,000 Belgians.
The Brussels Times contacted a spokesperson for the outgoing Federal Health Minister Frank Vandenbroucke but it is yet to receive a response as of the time of publication.
