Sunday, January 15, 2023. Like every weekend and taking advantage of the bright sun, Hernán Cortés Soria went for a walk with his dog, a female Labrador breed. Afterwards, continuing with his routine, he was having coffee with several friends. But when he got home he noticed how his hands and feet were falling asleep and in a short time fatigue and general malaise took over him, so he decided to lie down for a while, thinking he had the flu. When he went to get up he couldn’t do it. He wasn’t able to speak either, he just babbled. His wife then took him to the hospital, fearing that it was a stroke, but after several tests and after being observed by the doctor on duty, he quickly received the diagnosis: he had Guillain-Barré syndrome, a rare disease in which A person’s immune system attacks their own peripheral nervous system, destroying the nerves.
«They put me in a coma that same night. I woke up two weeks later to find a healthy brain in an unresponsive body. It’s something desperate,” explains Cortés Soria to ABC almost two years after that day. At that time, he says, he couldn’t do anything for himself. His limbs didn’t work, neither did his organs. It’s not that they were dead, he continues, but they didn’t function as they should. They gave him a tracheostomy, he couldn’t breathe on his own… but his brain was intact. “I had no symptoms days before, or I don’t remember having them, and that same night they put me in a coma and I woke up two weeks later in an ICU completely monitored and unable to respond to anything,” he recalls.
Zika virus
This disease, points out Alejandra Pérez del Real, president of the Autoimmune Neuropathies association, is caused by a poor response of the autoimmune system to some type of infection or trauma. «The only causal relationship demonstrated is with the Zika virus and, less clearly, with the Epstein-Barr virus. But the crux of the matter is why some people develop it and others don’t,” he explains.
The data managed by the Autoimmune Neuropathies association put the incidence of Guillain-Barré syndrome at 1.45 cases per hundred thousand inhabitants, with around 812 diagnoses each year in Spain. According to Pérez del Real, approximately 40 percent of patients with the disease suffer sequelae. «The majority tend to be mild or more pronounced tremors or neuropathic pain. But if there is axonal damage (in the nucleus of the nerve) we can be talking about never walking again and, in some isolated cases, not recovering the use of our hands either,” he explains.
The president of the association also explains that around 2 or 3 percent of patients develop the syndrome again. The severity of the disease, he says, “depends on the axonal damage and the intensive rehabilitation that is done.” «I am very big and I have to do everything in a big way, in a big way. So it hit me in the worst way,” Hernán Cortés jokes now.
This patient was hospitalized for ten months. First in the ICU of the Quirón Hospital in Pozuelo, where he had been diagnosed with the disease, and then in the National Hospital for Paraplegics in Toledo. «It is a very cruel disease because you start from scratch. I have learned again to speak, to eat, to breathe, to stand up, to walk… You have to learn everything again because your brain knows it but you can’t do it, they have to teach you little by little how to do it. things,” says Cortés Soria.
Three hours a day
His recovery, says this retired sustainability sector executive, has been the result of “work, patience and perseverance.” Rehabilitation is part of his daily routine and there is not a single day – not even holidays – in which he does not do any type of exercise for his improvement. «From the first day, I dedicate 3 hours a day to it. And also at home I do a lot of work, simple things like peeling a tangerine, taking clean clothes and folding them or setting or removing the table,” he says.
At first facing this situation is very hard, this patient continues, but he believes that psychologically it has nothing to do with other diseases such as amyotrophic lateral sclerosis, because in the case of Guillain-Barré the prognosis is good and “everything is going up.” ». «You get stronger because you see that everything is going upwards. At first it costs a lot. You get home and it seems hostile, with a bed you can’t get into, a shower you can’t use yourself… but in the end you get it. Little by little you set small goals that are difficult for you but that you know you can achieve. And the day you get it you cry with emotion.
During the time he was hospitalized, he began to repeat his story in his head, creating a kind of story that later, at home, he would transfer to a book: ‘Don’t let a Guillain-Barré catch you’. The 3,000 euros that he has earned to date from the sale of this book have been allocated to research into the disease, one of the goals that has been set for 2025. «I want to give visibility to this disease, which is barely known, and also support research. In Guillain-Barré, early detection is key, if it is not detected early and a harsh and exhaustive treatment is given, like the one they did to me, you can die. “You have to have a good diagnosis,” he claims. And his third objective for this year is to make his case known so that other patients who go through the same thing he went through see how, after two years, he has recovered the life he had before January 15. «You have to work, not give up and have enthusiasm. It will take more or less, but it will be like before,” he concludes.
#learn #talk #walk #strange #illness
