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Friday, April 20, 2018

The mysterious illness that only occurs in Sweden

Por Jade

It affects only the children of those seeking asylum and the symptoms include complete isolation. They stop walking and talking or opening their eyes. Eventually, they recover. An image of two sisters suffering from this rare syndrome won the first individual prize in the category "People" in the 2018 edition of the prestigious annual World Press Photo photojournalism contest.

On the image of the Swedish photojournalist Magnus Wennman, taken in March last year in Horndal, in the south of the country, it is explained: "Djeneta has been bedridden for two and a half years without answering and her sister Ibadeta goes more than six months". The story of these sisters, refugees from Kosovo, is part of a strange phenomenon that only happens in Sweden.

When her father loads her wheelchair, Sophie, 9 years old, is totally inert. Her hair, however, is thick and shiny, like that of a healthy girl. But Sophie's eyes are closed. Use a diaper and carry a probe attached to the nose: this is how the girl has been fed during the last 20 months. Sophie and her family are seeking asylum and come from the former Soviet Union. They arrived in December 2015 and live in a refugee shelter in a small town in central Sweden. "Her blood pressure is quite normal," says Dr. Elisabeth Hultcrantz, a Physician of the World volunteer. "But her pulse is high so maybe she's reacting to so many people who came to visit her today."

Hultcrantz analyzes Sophie's reflexes. Everything works normally. But the girl does not move. Hultcrnatz, who used to be an otolaryngology surgeon before retiring, is worried because Sophie does not even open her mouth. This can be dangerous because if there was a problem with your catheter, the girl could choke. But how did a girl who loved to dance become so inert? "When I explain to parents what happens, I tell them that the world has been so terrible that Sophie has turned to herself and has disconnected the conscious part of her brain," says Hultcrantz.

Health professionals who treat these children agree that trauma is what has caused their isolation from the world. The most vulnerable children are those who have witnessed extreme violence, often against their parents, or whose families have fled from a deeply insecure environment.

The first time the resignation syndrome was reported in Sweden was in the late 1990s. From 2003 to 2005, more than 400 cases have been reported. As Swedes begin to worry about the consequences of immigration, these "apathetic children," as they are known, have become a huge political issue. It was said that the children were pretending or that the parents were poisoning them to ensure their residence. None of these stories has been proven. In the last decade, the number of children who have been reported suffering from resignation syndrome has decreased.

The Swedish National Board of Health recently stated that there were 169 cases in 2015 and 2016. The most vulnerable are still children from particular geographical and ethnic groups: those from the former Soviet Union, the Balkans, gypsy children, and more recently the Yazidis. Only a small number are unaccompanied migrants, none comes from Africa and there are very few from Asia. Unlike Sophie, affected children have often been living in Sweden for years, speak the language and are well-adjusted to their new Nordic lives. In the past several disorders similar to the resignation syndrome have been reported, for example, in the Nazi concentration camps.

In the United Kingdom, a similar disorder, widespread rejection syndrome, was identified in children in the early 1990s, but there have been very few cases and none among asylum seekers. "As far as we know, no case has been established outside of Sweden," writes Dr. Karl Sallin, a pediatrician at the Astrid Lindgren Children's Hospital, which is part of the Karolinska University Hospital in Stockholm.

How can a disease respect national borders? There is no definitive answer to the question, says Sallin, who is investigating the resignation syndrome for his postgraduate program. "The most plausible explanation is that there are certain socio-cultural factors that are necessary for this disorder to develop. One way to react or respond to traumatic events seems to be legitimized in certain contexts."

Somehow, although the mechanisms are not known or why it happens in Sweden, the types of symptoms presented by children are culturally sanctioned: it is the way these minors are allowed to express their traumas. If that is the case, this raises an interesting question: is the syndrome of resignation contagious? "That's something implicit in the model, if you offer the right type of nutrient to that kind of behavior in a society, you'll also see more cases," says Sallin. The main obstacle to understanding the disorder is the lack of research on it. No one has followed what happens with these children. What we know is that they survive.

For Sophie's parents it is hard to believe. They have not seen changes in their daughter for 20 months. Her days are directed by the girl's regime: exercises so that her muscles do not wear out, attempts to involve her with music or cartoons, walking outside with her wheelchair. "You have to harden your heart with these cases," says Sophie's pediatrician, Dr. Lars Dagson. "I can only keep it alive, I cannot make it better because as doctors, we do not decide if these children can stay in Sweden or not."

Dagson's point of view is common among doctors who treat children with resignation syndrome: recovery, they believe, depends on their feeling safe and that is a permanent residence permit that initiates that process. "In a certain way the child has to feel that there is hope, something to live ... that is the only way I can explain why having the right to stay, in all the cases that I have seen, changes the situation". Until recently, families with a sick child could stay in the country. But the arrival of some 300,000 immigrants in the last three years has led to a change. Last year, a new temporary law came into force that limits the possibilities of asylum seekers to obtain permanent residency. Applicants receive a visa for 13 months or 3 years. Sophie's family obtained the first, and it expires in March of next year.

"What happens next, the real issue has not been addressed, it's a limbo," says Dagson. He doubts that Sophie recovers in 13 months. "I cannot say it is not possible, but it all depends on how the parents feel, will they stay after 13 months? If they are not sure of that, they will not be able to make Sophie feel that everything is fine." But there is evidence in the city of Skara, in southern Sweden, that suggests there may be a way to cure children with resignation syndrome even if the family does not obtain permanent residency. "From our point of view, this particular disease has to do with past trauma, not asylum," says Annica Carlshamre, a social worker with the Salud Gryning company, which runs Solsidan, a home for all kinds of children with problems.