The inspiring story of the young woman who overcame two encephalitis in a row: "It's as if she had lived through it in a coma"

The life of Marta Huertas and that of her family changed completely almost seven years ago.

The young woman from Orihuela (Alicante), who is now 18 years old, suffered two encephalitis when she was 11: the first, infectious, was caused by the herpes simplex virus;

the second was of autoimmune origin and was a consequence of the previous one.

In a matter of weeks, she stopped walking, talking, and eating on her own.

She spent months in the hospital and required a combination of treatments, including chemotherapy, and rehabilitation to recover.

The documentary

, premiered on February 17, tells her story and aims to publicize this rare disease, which, in the case of herpetic encephalitis (the first that the young woman suffered), affects one person in every 250,000 a year in the world, according to Orphanet, the European database of rare diseases.

Her parents tell the story because she remembers practically nothing from that time: "It's as if she had lived through it all in a coma."

When she recognized herself again, she was almost fourteen years old: for her it was a very shocking moment, "as if I had gone to bed and when I got up I had another body and another way of being," she explains.

Encephalitis is an inflammation of the brain that can occur from multiple causes and cause neuronal damage.

In addition, it cannot be predicted: there are many reasons that do not have risk factors and can happen to anyone, of any age, according to Thaís Armangué, who treated the young woman and is a researcher at the August Pi i Sunyer Biomedical Research Institute ( IDIBAPS) of the Hospital Clínic in Barcelona.

In Marta's case, it was initially caused by the herpes simplex virus, the same virus that frequently causes the appearance of thrush in the mouth.

"In a very small percentage of patients, it is not known in many cases why this serious illness can be caused," explains the head of Neuroimmunology at Hospital Sant Joan de Déu.

Herpetic encephalitis meant that Marta was admitted to the Pediatric ICU of the Dr. Balmis General Hospital in Alicante for almost three weeks.

The young woman was referred from the Hospital Comarcal de la Vega Baja, in her hometown, where doctors had already started treatment with acyclovir, an antiviral drug.

It is as if I had gone to bed and when I got up I had another body and another way of being.

Marta Huertas, a patient who overcame two encephalitis

It is a worldwide protocol.

Given the suspicion of encephalitis, this treatment is always started to cover the possibility that it is herpetic, details Armangué.

The disease is very serious and involves a race against time, so starting it up as soon as possible can change the prognosis.

"Before acyclovir, more than 70% of patients died," the neuropediatrician explains.

After that first process, Marta improves and they send her home.

However, her family sensed that something was wrong, they noticed her very sad and had some strange behaviors: "She moved the armchairs a lot and asked the time non-stop, it was as if she had OCD (Obsessive Compulsive Disorder)," her mother narrates. , Fuensanta Gil.

A week after returning from the hospital, the young woman began to have trouble walking until, within a couple of 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 the Alicante Hospital, where she was admitted again.

After 48 hours she didn't eat, she didn't talk and she couldn't do anything for herself, adds Gil.

She was admitted back to the ICU and there she spent almost a month and a half.

Her doctors knew it was autoimmune encephalitis, though not what kind, 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.

An acquaintance from her town told the family about Dalmau's work, which has discovered 11 of the 17 types of autoimmune encephalitis known to date.

Gil got his email address online and contacted him to talk about Marta's case.

At that moment, a new door was opened for the Huertas family: "He suggested that my daughter's doctors contact him, who was willing to help us," recalls the mother with emotion.

He was like a baby, you had to feed him, he walked very badly, he wore a diaper and did not speak

Fuensanta Gil, mother of Marta Huertas

Two months later, they referred Marta to the Hospital Sant Joan de Déu.

At that time, her mother affirms, she always needed two people to look after her: "She was like a baby, you had to feed her, she walked very badly, wore a diaper and didn't speak."

In addition, she remained catatonic looking at infinity and if she put herself in a position she did not know how to undo it, recalls Armangué.

In Barcelona they gave Marta's second ailment 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 around 5%, according to Dalmau.

Marta's body had developed a "misdirected" immune response against NMDA receptors in the brain, which are involved in functions such as learning and memory, explains Professor ICREA.

In these cases, the prognosis is even more uncertain because the brain is already previously damaged by the virus, Armangué adds.

Josep Dalmau and Thais Armangué from the IDIBaps of the Hospital Clínic de Barcelona.

MASSIMILIANO MINOCRI

In older children like her, the disease manifests itself through behavioral changes, which meant that she was completely uninhibited and had those "strange" behaviors that her parents talk about: "She spent a whole day in the hospital without stopping doing sit-ups" says his mother.

The team decided to use a more aggressive treatment with the girl, who a few months earlier had turned 12 in the ICU.

For six months, the Oriolana received chemotherapy every 21 days at the Alicante hospital, always supervised by Armangué, to make the situation a little easier for the patient and her family.

"After the first session it was already another," says her father, Kiko Huertas.

Her mother assures that Marta was already building Lego constructions when they went for the second treatment session.

"For us it was spectacular, it was our daughter's salvation," the two parents say excitedly.

The researcher states that the procedure with each patient depends on the cause of the encephalitis.

Until now, for the autoimmune type, corticosteroids and sometimes immunoglobulins were generally used.

"Understanding the underlying mechanisms is helping 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, she advised a more aggressive strategy that ended up working.

Marta's story is very beautiful, but there are younger children who do not have such a good response

Thaís Armangué, neuropediatrician

Armangué emphasizes the need to be realistic with the relatives of each patient and to control expectations: "Marta's story is very beautiful, but there are younger children with this complication who, even if we use aggressive treatments, do not have such a good response , so it is necessary to continue investigating its prevention”.

That is one of the questions that she and Dalmau try to solve: why is there a percentage of people who do not obtain results, or do not obtain the desired ones.

In addition to the hospital procedure, Marta required rehabilitation to recover.

For six months she went with her mother to a clinic in Alicante every day from eight in the morning to three in the afternoon.

She had to start from scratch, relearning how to walk and talk.

Marta has returned to being a completely independent person, although due to encephalitis she now suffers from dyslexia and, since 2020, epilepsy that she controls with medication.

For a long time the young woman wanted to tell her story in some way to give visibility to these rare diseases and for her the documentary has been "a gift", says her mother.

Her recording has helped her learn about the process she and her family went through and she hopes that her story will help and give hope to other people who are going through the same thing as her.

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