The risk for serious brain diseases among Norwegian-Pakistani children is 7 times higher than for Norwegian children, and even higher (11 times as high) if the parents are cousins.
[Ed: The article (PDF, NO) says the risk is 7 times higher, but the accompanying chart shows the incidence rate is 3.5 times higher. ]
Doctor Øivind Juris Kanavin and professor Petter Strømme of Ullevål University hospital in Oslo, wrote an article on children with brain diseases which was published by the Norwegian Medical Association Thursday. Both are experts in brain disorders in children.
They've seen that such disorders are often hereditary. Most cases are complex and in-marriage is a major risk factor.
Kanavin made contact with social-anthropologist Hilde Berge, who works at the learning and competence center for children, youth and their families (LMS-barn) and social worker Ragnhild Gardsjord of the rehabilitation department at Ullevål, who founded a group for Norwegian-Pakistani mothers this winter.
All the women have children with serious brain disorders, and they are are concerned about having more children.
Gardsjord says that it turned out there was a great need for such a group. Many had nobody they could speak to or share the challenges with. One young mother told them that if she didn't have this group, she herself would need to go to a psychologist.
In many cases the parents are relatives, often cousins.
"One mother told me: there was a celebration in the family when I gave birth to a son, but the celebration quickly died down when it turned out that he had a brain disorder. It was problematic for the family."
This young mother, who was married her cousin through an arranged marriage says that she had told her mother in advance that there might be a danger of sick children, says Berge.
Berge and Gardsjord says that the second generation of Norwegian-Pakistanis know much more about hereditary diseases than does the parents' generation.
Berge says that arranged marriages are still very common and that some women say their concerns about links between in-marriage and disease are dismissed. Gardsjord says that the women tell of ignorance among some in the Pakistani community. There is also a lot of taboo, shame, prejudice and guilt.
Berge says that there are stories about children who get better after they were sent back to Pakistan, mothers get 'good advice and tips' about different forms of treatment which are 'good for the children' or which will make 'the children healthy'.
The mothers in the group had asked for a meeting with their parents and parents-in-law, where a doctor could talk about hereditary diseases and give genetic counseling.
The doctors Kanavin and Strømme wrote about the issue because though those are rare diseases, it's very serious for those concerned.
The diseases have high mortality, a very demanding of resources, and meanwhile there are some treatment options for some of them. In addition, there was a study in Oslo that they wanted to clarify.
Kanavin says that children with progressive brain diseases gradually loss motor skills, lose the ability to orient in time and space, have impaired attention, lose the ability to calculate and write, and have reduced social skills. He says the progress can be slow or very fast.
Kanavin says there are many different causes, most of them hereditary. In about 20% of the cases, there is no clear diagnosis.
A lot of assistance is needed for such diseases. It's not uncommon to have 15-30 professionals involved with one patient. Kanavin says that it's challenging work in all areas with these patients.
Through his work Kanavin is in regular contact with families who have children with these serious disease and he admits it can be challenging to meet with the group which is overrepresented, the Norwegian-Pakistanis. It is difficult for many of them to understand the biological causes of these conditions, some don't have the terms to deal with it. Language is also a big problem, and often information is communicated via interpreter.
He says they're rather direct when they speak to parents about the causes and that there's additional risk when the parents are relatives. The diseases occur when the child inherits a defective gene from both the mother and father. They tell the parents that there's a 25% chance that the next child will also get the same thing.
Source: Aftenposten (Norwegian)