Meningitis, a disease with too many questions and few answers

Twelve hours. Noon. It’s all that meningococcal sepsis (the most serious version of meningitis) needs to wipe out a healthy person. Or to cause irreversible injuries that change your life forever: deafness, neurological disorders, intellectual or communication deficiencies or severe amputations of the four limbs are just some of its consequences. Its incidence is very low (one case for each 100. people) and can happen at any age, but it is particularly harsh in infants under one year of age, children under five years of age and young people among the 15 and 24 starting to move in group settings. It sounds like a disease of the past, but in the 21st century, meningococcal sepsis in Spain is the leading cause of death from infection in children and adolescents.

The localized form of this disease is called meningitis and it is defined as an inflammation of the membranes that cover the brain and spinal cord caused by a pathogen of very diverse origin. In Spain there are some 12. people affected per year by meningitis. Of them 10 . 000 would be viral and 2. 000, of bacterial origin – Haemophilus Influenzae B (HiB), pneumococcus or meningococcus (mainly by serogroups A, B, C, W and Y) -. Meningococci are those associated with more serious conditions, such as meningococcal sepsis. Even with emergency hospital treatment, a 10 % of those affected die and close to 20% will suffer side effects of for life.

The worst thing is that you can’t see it coming. “It is spread by air (breathing) and the symptoms can easily be confused with an upper respiratory tract cold: fever, headache … There may also be vomiting or a stiff neck. In the case of babies, who cannot tell what is happening to them, there is a lot of irritability, a very disconsolate cry ”, says the Primary Care pediatrician and member of the Scientific Committee of the Spanish Association against Meningitis (AEM), María Garcés -Sanchez. Petechiae (purple spots that spread throughout the body and grow in size) or bulging fontanelles in infants are other characteristic features, but they do not always appear. “That is why it is possible that the pediatrician sends the patient home when signs of severity are not initially appreciated. And at 12 hours he arrives at the emergency room practically dead. It’s terrible”. Upon admission, a race against the clock begins that begins with a lumbar puncture to confirm the diagnosis. Every minute counts. Those with the worst prognosis spend many days admitted to the pediatric ICU.

Why is it progressing so fast?

The clinical manuals of the Spanish Society and Foundation for Pediatric Intensive Care qualify sepsis as a “medical emergency” and use the adjective “fulminant” to refer to its rapid evolution. In some cases the infection is limited to the meninges. In others, it spreads to the blood. Then it is called sepsis. “This is the most serious form, since it causes a wild deterioration at the level of the whole organism,” says the pediatrician. There can be one, the other or both. “Pediatricians have spent years trying to configure severity criteria to predict how the disease will evolve in each child. But it is like a sinister lottery: you can already be the best doctor in the world that the disease has its course and nothing guides us towards a child being at greater risk than another ”, says Dr. Garcés-Sánchez.

The paradox is that the meningitis pathogen can live in the respiratory tract of some patients who do not develop the disease

Such rapidity is explained by the confluence of a pathogen traveling freely through the bloodstream that encounters a disproportionate immune response. “To explain it in a more informative way: the defense army of our organism realizes that an invader has reached the most sensitive territory of our organism which is blood and reacts so intensely that it generates a phenomenon of intravascular coagulation ”, explains this pediatrician. “This answer ends up doing more damage to the organism instead of saving it.”

The answer may lie in genetics

The paradox is that the pathogen can live in the respiratory tract of some patients without developing the disease. “Doctor Federico Martinón-Torres, head of the Pediatric Service of the Hospital de Santiago de Compostela (A Coruña), has been working for years in genetic studies with children. It started out of your family experience. In his house there are many brothers. One was colonized, but had not passed the disease. Another had it mildly and a third suffered meningitis ”, the doctor explains. That led him to think of a genetic pattern that would determine that, apart from the bacteria, the organism reacts differently.

“They found that children who had had the disease had an alteration in a protein, Factor H, which seems to condition them to suffer the disease more seriously. It is a light in the approach to meningitis, although we are still at the dawn of really knowing the genetic pattern that determines that a person has access to greater or lesser risk of having meningococcemia ”.

Fortunately, the emergence of covid has brought a decrease of 90% of cases of meningococcal disease. It points to movement restrictions and protection measures from the pandemic, “but it is not entirely clear if it is only due to the masks or if there are other factors that we do not know related to the ecology both viral and bacterial. Because neither infants nor children under 5 years of age wear a mask and infections have also fallen ”. Far from throwing the bells flying, this pediatrician warns: “We also know that this pathogen has not gone away and we do not know when it will increase again.”

The burden of the sequelae

Cristina Regojo, president of the Spanish Association against Meningitis (AEM), suffered this disease when she was 4 years old and left her with profound bilateral deafness. His case is not isolated: a pioneering study financed entirely by the AEM shows that the 55% of those who suffer from it suffer physical consequences and 60% require continuous emotional support . “The severity of the sequelae demands very expensive care and therapies. It is estimated that the annual cost of caring for a person affected by meningitis amounts to 11. 050 euros. That amount can reach up to 921. 901 euros throughout the life of the patient, ”says Regojo. Prosthetics, rehabilitation, cochlear implants, lifelong medication are needed and, in a 60% of the cases, continuous psychological therapy.

La doctora Cristina Regojo sufrió meningitis con 4 años, que derivó en sordera bilateral.
Dr. Cristina Regojo suffered meningitis at the age of 4, which led to bilateral deafness. Courtesy of Cristina Regojo

Psychological support is not limited only to patients . Meningitis devastates the entire family environment and many need help to rebuild their new normal from scratch. Regojo grew up with the shelter of a large family. She continued going to the same school, although in the afternoons she needed the support of speech therapists and private teachers because her hearing difficulties made it difficult to follow the classes. “It was a normal childhood, although perhaps with more effort than other children,” he says. Determined that hearing loss would not cut her wings, she studied Medicine and today is a specialist in Clinical Analysis at the Álvaro Cunqueiro and Meixoeiro hospitals (Vigo). In addition, it coordinates AEM’s psychological care for those affected. “We have a WhatsApp group to exchange our thoughts and outlets. Before the pandemic, we had meetings to share experiences and give each other support. At present, we continue but in a virtual way. ”

From the AEM a protocol and a plan of action that meets the needs of those affected and their families throughout the process

Rejoicing focuses on a reality that is repeated too much frequency when it comes to caring for dependent people: “Meningitis relapses in women. The 45% of the mothers of those affected had a paid job when her son contracted the disease. Afterwards, only the 14% works because their children require lifelong care. These mothers need approximately 20 hours per week to attend to their needs, which it turns them into caregivers to whom the labor market closes the door ”. For this reason, the AEM calls on all administrations to articulate a protocol and an action plan that covers all the needs of those affected and their families from the moment they enter the emergency room until the evolutionary follow-up and sequelae of for life. “Something as unequal as the purchasing power level determines the access to better treatments and more sophisticated prostheses. And this conditions the quality of life of the person ”, he concludes.

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