Frank is 56 years old and a support employee at a transport company. In addition, he is board member of the Association of People with Burns. Frank is seriously ill due to a Necrotizing Soft Tissue Infection (NSTI), better known as a flesh-eating bacteria.
In 2005, Frank developed a painful spot on his arm with a burning sensation. In just a few days this spot is getting more red and bigger. Frank also gets a fever. The doctor tells him that it is an allergic reaction and gives him an antibiotic treatment. When suddenly a big blister arises on Frank’s arm the doctor advised him to wait until the antibiotics started to function, but when the blister burst, he went to the hospital anyway. It quickly became clear that it wasn’t an allergic reaction. “The doctors didn’t know what it was, but it was so serious that they wanted to warn my family for the worst. Before I knew it, I was in a coma.”
Infection after infection
After a week and three operations, Frank woke up from his coma. Fortunately he recovered, but the infection didn’t heal yet. Not just in his arm, also other parts of his body, the flesh-eating bacteria caused a lot of damage. Frank underwent many unsuccessful skin transplantations. “There were almost always complications. In the hospital I got several other infectious diseases (1) that were difficult to treat and caused my new skin to become infected and repelled. That’s why I had to be operated on, again and again. Between 2005 and 2021 I have had 40 operations.
Big impact
The impact of the flesh-eating bacteria on Franks life was and still is very big. “The surgical operations have damaged my nerves and muscles. I can’t move my arm properly and because of this I am in a lot of pain. Because the skin tissue in addition continues to change, I feel that there is tension on the skin around my scars, therefore there is a good chance that I will have surgery again. It worries me a lot.
Contact with fellow victims
It was also mentally tough. “As a result of the many hospital visits I have developed post-traumatic stress disorder ,PTSD (2) ” I often felt very lonely during my illness-process. The people around me were of course concerned , but it was difficult for them to really understand me and they often didn’t know how to react. ” The pleasant contact with fellow patients at the Association of People with Burns however helped Frank with processing the matter. ” I experienced a lot of support and understanding. They feel like my family.”
More research and recognition
Although NSTI is rare, more attention is needed for the impact of the disease according to Frank. “NSTI is an acute and life-threatening infection and the number of people contracting this infection is increasing. Researchers don’t know why that happens, but the fact that people, due to the corona pandemic, have built up less resistance, probably plays a role. There is also little knowledge yet about the nature of NSTI. “When I got sick, doctors knew very little about the infection. And that is still the case. The infection is tricky to recognize, because the symptoms are similar to an allergic reaction. This results in health care providers finding out that something serious is going on too late.”
Frank emphasizes that it is therefore extra important to give recognition to the concerns of the patients. “I was sent home several times by healthcare workers, while I indicated that things were not going well. You notice that there is often not enough time to listen to the patient. That has to change.”
(1) Sometimes it happens that patients also contract a hospital infection during their admission to hospital. A hospital-acquired infection is often strongly related to the treatment provided medical care and the patient’s reduced resistance. In 2021, the most common healthcare associated infections were surgical site infections, respiratory infections, sepsis and urinary tract infections (Source: VZinfo 2023).
(2) If you experience something shocking (a traumatic event) and do not process it properly, you can develop PTSD (post-traumatic stress disorder). It then feels like the unpleasant event haunts you with nightmares and lifelike memories (flashbacks). This can make you feel so bad that it is difficult to do everyday things to do.
(Source: Hersenstichting 2023).
With courtesy to SGF – The Netherlands