Sepsibel

Partner van sepsis slachtoffer

In februari 2023 begon de strijd van mijn man tegen sepsis. Mijn man werd in spoed opgenomen met een ernstige nierinfectie. Na bloedonderzoek bleek echter dat een gevaarlijke bacterie — Staphylococcus — in zijn bloedbaan was terechtgekomen. De infectie verspreidde zich door zijn hele lichaam en tastte verschillende organen aan. Pas dagen later hoorde ik voor het eerst het woord sepsis — een levensbedreigende reactie van het lichaam op infectie.

Hij belandde op intensieve zorgen, onderging zware hartchirurgie, en kende talloze complicaties: longontsteking, trombose, nieuwe infecties. Toch vocht hij dapper terug, ook na talloze weken in het ziekenhuis. Samen bouwden we stap voor stap zijn leven opnieuw op — soms letterlijk, electriciteitspaal per electriciteitspaal – tijdens korte wandelingen in onze straat.

Maar sepsis kwam terug. In 2024 volgden opnieuw een infectie, een tweede sepsis, en uiteindelijk een zware beroerte die hem zijn spraak en zelfstandigheid ontnam. Vanaf dat moment werd ik zijn stem. Na twee jaar van strijd en bijkomende complicaties stierf hij op 5 februari 2025.

Sepsis veranderde ons leven voorgoed. Ik leerde hoe snel een gewone infectie een leven kan bedreigen, en hoe zwaar de gevolgen zijn wanneer ze te laat wordt herkend of niet ernstig genoeg genomen.

Daarom vertel ik vandaag zijn verhaal. Niet alleen voor hem, maar voor alle patiënten en families. Sepsis is niet zeldzaam. Het kan iedereen overkomen. Het moet sneller worden herkend, beter behandeld, en de gevolgen moeten écht erkend worden.

Geen enkel gezin zou mogen meemaken wat wij hebben meegemaakt.

How do you actually...
get back on track after immense trauma?

How do you do it... get back on track after an immense trauma? And why do some people succeed, but not others? Is it just a matter of "making the click", Or is something more fundamental needed?

In her new book, Liesbeth Claeys dives deep into the topic of resilience. She asks the questions we all sometimes ask ourselves after a heavy blow:

Can train your resilience
Does it come in different forms?
What about children - are they actually more resilient than adults?

With an open mind, Liesbeth consulted experts and strong women who, each in their own way, braved the storms of life: Petra De Sutter, Uus Knops, Geena Peeters,... but also with Cindy Verthé, sepsis survivor, board member of Sepsibel Vzw and the epitome of resilience.

The result? A series of honest, powerful testimonies full of recognition, hope and inspiration.

This book is for anyone who wavers, but knows deep inside that there is still strength. For those who want to learn to fall, but also to get up again. For anyone looking for a foothold, and perhaps above all: for themselves.

PRESS RELEASE

Urgent need for broad awareness to save lives 

• 2 in 3 Belgians never heard of sepsis before 
• Only 1 in 5 Belgians know that sepsis is an extreme immune system response to infection
• 70% of Belgians say they want to know more about sepsis

Brussels, 13 September 2024 - On the occasion of World Sepsis Day, patient organisation Sepsibel reveals the results of a survey conducted by iVOX on knowledge about sepsis in Belgium. And they are alarming: only 33% of Belgians have ever heard of sepsis and only 18% understand what exactly the condition entails. And yet sepsis, an extreme reaction of the immune system to an infection, affects nearly 41,000 people in Belgium every year, 7,675 of whom die. Sepsibel therefore calls for immediate sensitisation to raise awareness and save lives.

Alarming figures

The survey shows that 2 in 3 Belgians have never heard of sepsis and only 1 in 5 know what sepsis is: an extreme reaction of the immune system to an infection. An equally large percentage confuse sepsis with blood poisoning, causing a misjudgement of the severity of the condition. There are striking regional differences here: in Flanders, 24% know what sepsis is, compared with 15% in Brussels and only 6% in Wallonia. 

Insufficient knowledge can cost lives

Sepsis is life-threatening and can lead to organ failure, septic shock and death without prompt treatment. Worldwide, 48.9 million people contract sepsis every year, of whom 11 million die. In Belgium, sepsis affects nearly 41,000 people annually, of whom 7,675 die.(1) Early recognition and treatment are crucial; every hour without intervention increases the risk of death by 4% to 8%.

Ilse Malfait, co-founder of Sepsibel and a sepsis survivor herself, describes in her book ''Every hour counts' her personal experiences. She Stresses the seriousness of these figures: "These results are worrying. Sepsis is one of the biggest silent killers worldwide and can be deadly if not recognised and treated quickly enough. Every hour counts. The lack of knowledge and awareness about this disease can literally cost lives. By focusing on prevention and early diagnosis, we can prevent many deaths."

Although knowledge about sepsis is low in Belgium, the survey found that almost three quarters of Belgians would like to know more about sepsis.

Ilse Malfait: "It is crucial that people not only know what sepsis is, but also understand the severity of the condition. Two thirds of those surveyed mistakenly believe that there are more road or breast cancer victims than sepsis deaths, which misjudges the risks. We urgently need to raise awareness about sepsis to ensure that people seek help in time." 

Broad national awareness is urgent
Following an earlier communication campaign by Sepsibel, Ilse Malfait's book on sepsis and a Pano report, earlier this year Minister of Public Health Frank Vandenbroucke asked for a scientific report on a national sepsis plan. An expert group led by professor Erika Vlieghe, infectiologist at the UZA and UA, drew up a report a few months ago with guidelines for early recognition and treatment of sepsis, as well as information and prevention.

"Effective management of sepsis requires the introduction of a national plan with lines of force that include not only prevention and education, but also guidelines for early diagnosis and treatment, awareness among both health workers and the general public, ongoing training for health workers, aftercare and patient support, and research and evaluation", said professor Erika Vlieghe.

Ilse Malfait points out that the findings of the iVOX survey underline the importance of a national plan as well as the urgency of broad awareness-raising: "The proposal presented earlier this year by Professor Vlieghe and her team provides a solid basis for tackling sepsis in Belgium. However, further action is needed to translate the recommendations from this plan into concrete actions to step up the fight against this silent killer. We hope that a national sepsis plan will soon be implemented, as recommended by the WHO in 2017. Meanwhile, we make an urgent call for broad national sensitisation that is essential to save lives. Because previous communication campaigns in Flanders have paid off, as the figures show." 

About the study:
The survey was conducted online by research firm iVOX between 28 August and 2 September 2024 among 2,000 Belgians, representative by language, gender, age and degree. The maximum margin of error is 2.08%. The study was made possible by Bemedtech, Biomérieux, BD, Thermo Fischer and Roche.

About Sepsibel

Sepsibel is a Belgian non-profit organisation working for sepsis survivors and relatives of deceased sepsis victims. Founded by people who have themselves survived sepsis, the organisation aims to raise awareness about sepsis among policymakers and the general public. Sepsibel also focuses on improving the mental, social and physical health of people who have survived sepsis and those around them.

(1)  These figures are based on a reputable scientific study, exact counts are not available as sepsis is still not registered in Belgium.

An ambitious national sepsis plan is handed over by an expert group to the Belgian health minister today

Last year, following a television report on sepsis, there was a demand for a scientific report regarding a national sepsis plan. A group of experts worked on this for six months. The working group consisted of 62 experts from different disciplines within the healthcare sector, including doctors, nurses, physiotherapists and sepsis survivors.

Patient organisation Sepsibel is very happy with the result. For four years, we have fought heaven and earth to get things moving. 

After the Pano report we were contacted by many. It was remarkable how many victims struggle with post sepsis effects such as concentration problems, nerve pain and memory loss. 'Finally sepsis is coming to the fore,' they emailed, after which they told of the lack of understanding surrounding their severe symptoms. Even last week, we talked to relatives of two deceased young victims. Their story touches you to every fibre. It makes us keep fighting hard for awareness about sepsis. 

And now there is this long-awaited scientific sepsis report. It is a feat, especially considering the speed with which it was produced and the large number of doctors, nurses, experts, organisations and sepsis survivors involved. The collaboration was excellent. People really listened. 

We are especially relieved for the recognition of the pain points raised. The management of sepsis in our country could be better, concluded the Pano report. This is also reflected in the report's many recommendations.  

Much work remains to translate these recommendations into legislation and initiatives. In the short term, the sepsis body should be established, from which the implementation of the entire plan will be monitored. We hope this happens soon, as every hour counts. We are hopeful for the future.