The life of Marta Huertas and her family changed completely almost seven years ago. The 18-year-old young woman from Orihuela (Alicante) suffered from two cases of encephalitis when she was 11: the first, contagious, was caused by the herpes simplex virus; the second was autoimmune in origin and a consequence of the previous one. Within a few weeks, she stopped walking, talking, and eating on her own. He spent months in the hospital and required a combination of treatments, including chemotherapy and rehabilitation, to recover. The documentary Mirar al miedo, which premiered on February 17, tells her story and aims to publicize this rare disease, which in the case of herpetic encephalitis (the first suffered by the young woman) every 250,000 years according to Orphanet, the European database for rare diseases.
The story is told by her parents because she remembers practically nothing from that time: “It’s like she saw it all while she was in a coma.” She was almost fourteen when she recognized herself: for her it was a very powerful moment, “as if I had gone to bed and when I got up I would have a different body and a different way of being,” she explains.
Encephalitis is inflammation of the brain that has multiple causes and can cause neuronal damage. In addition, it cannot be predicted: there are many reasons that have no risk factors and can happen to anyone at any age, according to Thaís Armangué, who treated the young woman and is a researcher at August Pi i Sunyer Biomedical Research Institute ( IDIBAPS) of the hospital Clinic in Barcelona. In Marta’s case, it was originally caused by the herpes simplex virus, the same virus that commonly causes the appearance of thrush in the mouth. “In a very small percentage of patients, in many cases it is not known why this serious disease can be caused,” explains the head of neuroimmunology at Hospital Sant Joan de Déu.
Herpetic encephalitis led to Marta being in the pediatric intensive care unit at Dr. Balmis was recorded in Alicante. The young woman was referred from the Comarcal de la Vega Baja Hospital in her hometown, where doctors had already started treatment with aciclovir, an antiviral drug.
It’s like I went to bed and when I got up I had a different body and a different way of being.
Marta Huertas, a patient who has recovered from two cases of encephalitis
It’s a worldwide protocol. If encephalitis is suspected, this treatment is always started to cover the possibility that it is herpes, Armangué says. The disease is very serious and involves a race against time, so starting as early as possible can change the prognosis. “Before aciclovir, more than 70% of the patients died,” explains the neuropediatrician.
After this first process, Marta improves and they send her home. However, her family felt something was wrong, they noticed her very sadly and had some strange behaviors: “She moved the armchairs a lot and kept asking what time it was, it was like she had OCD (Obsessive Compulsive Disorder)” her mother told . , Fuensanta Gil. A week after returning from the hospital, the young woman began having difficulty walking until, within a few days, she was practically unable to move her right leg.
Marta and her family pose for a photo in Orihuela JOAQUIN DE HARO RODRIGUEZ
Her parents decided to take her back to Alicante Hospital where she was admitted again. After 48 hours, Gil added, she hadn’t eaten, spoken, or been able to do anything on her own. They took her back to the intensive care unit and spent almost a month and a half there. Her doctors knew it was autoimmune encephalitis, but not what type, and had started treating her with immunotherapy. The answer was given by Dr. Armangué and Josep Dalmau, ICREA Professor at IDIBAPS at Hospital Clínic de Barcelona.
A friend from her town told the family about Dalmau’s work, which has discovered 11 of the 17 known types of autoimmune encephalitis. Gil got his email address online and contacted him to discuss Marta’s case. At that moment, a new door opened for the Huertas family: “He suggested that my daughter’s doctors contact him, who was willing to help us,” the mother recalls with emotion.
He was like a baby, you had to feed him, he walked very badly, he wore a diaper and didn’t speak
Fuensanta Gil, mother of Marta Huertas
Two months later, they transferred Marta to the Sant Joan de Déu hospital. Back then, says his mother, he always needed two people to take care of: “He was like a baby, you had to feed him, he walked very badly, wore a diaper and didn’t speak.” Also, she remained catatonic at the sight of infinity, and when she was put in a position, she didn’t know how to undo it, Armangué recalls.
In Barcelona they gave Marta’s second condition a name: she had postherpetic autoimmune encephalitis. This is a complication that occurs in 25% of patients with this type of viral encephalitis and has a mortality rate of about 5%, according to Dalmau. Marta’s body developed a “misguided” immune response against NMDA receptors in the brain involved in functions such as learning and memory, Professor ICREA explains. In these cases, the prognosis is even more uncertain because the brain has already been damaged by the virus, adds Armangué.
Josep Dalmau and Thais Armangué from the IDIBaps of the Hospital Clínic de Barcelona. MASSIMILIANO MINOCRI
In older children like her, the condition manifests itself through behavioral changes, leading to her being completely uninhibited and exhibiting those “weird” behaviors her parents speak of: “She spent a whole day in the hospital without stopping, doing sit-ups to do.” says his mother.
The team opted for more aggressive treatment of the girl, who had turned 12 in intensive care a few months earlier. For six months, the woman from Oriolan received chemotherapy every 21 days at the Alicante hospital, always under the supervision of Armangué, to make things a little easier for the patient and her family. “After the first session, there was another one,” says his father Kiko Huertas. Her mother assures that Marta was already making Lego constructions when they went for the second treatment. “It was spectacular for us, it was saving our daughter,” say the two parents enthusiastically.
The researcher states that the procedure for each patient depends on the cause of the encephalitis. To date, corticosteroids and sometimes immunoglobulins have generally been used for the autoimmune type. “Understanding the underlying mechanisms helps us to treat them more specifically,” says Armangué. When Marta arrived in Barcelona, she had already received some of these medicines. However, given the lack of response and the certainty that it was an autoimmune complication, they recommended a more aggressive strategy, which ultimately worked.
Marta’s story is very nice, but there are younger children who don’t respond so well to it
Thaís Armangué, neuropediatrician
Armangué emphasizes the need to be realistic with each patient’s loved ones and to control expectations: “Marta’s story is very beautiful, but there are younger children with this complication who, even when we use aggressive treatments, do not respond as well. therefore, it is necessary to further study its prevention”. That’s one of the questions she and Dalmau are trying to solve: Why is there a percentage of people who don’t get results or don’t get the results they want?
In addition to the hospital procedure, Marta required rehabilitation to recover. For six months, he and his mother went to a clinic in Alicante every day from 8 a.m. to 3 p.m. He had to start from scratch, relearn how to walk and speak.
Marta is a completely independent person again, although she now suffers from dyslexia due to encephalitis and, since 2020, from epilepsy, which she is getting under control with medication. The young woman has long wanted to tell her story in order to make these rare diseases visible, and for her the documentary film is “a gift”, says her mother. Recording has helped her learn more about the process she and her family have been going through, and she hopes her story will help and give hope to others who are going through the same things as her.
you can follow THE COUNTRY Health and well-being on Facebook, Twitter and Instagram.