Björn Bjurulf: New knowledge may help children with severe epilepsy
Dravet syndrome (DS) is usually caused by a gene mutation that leads to difficult-to-treat epilepsy. In his doctoral project, Björn Bjurulf has mapped psychosocial aspects of the syndrome. He hopes that the research results will lead to children with DS receiving better care and help.
BJÖRN BJURULF
Dissertation defense: 8 February 2024 (click for details)
Doctoral thesis: Psychosocial Aspects of Dravet Syndrome
Research area: Pediatrics
Sahlgrenska Academy, The Institute of Clinical Sciences
What is the background to your thesis?
“Dravet syndrome represents a severe form of epilepsy. Children who are affected experience prolonged seizures starting in their first year of life. Every child with DS battles with persistent epilepsy, and the majority also face intellectual disability. Commonly, these children struggle with behavioral and sleep issues. Notably, they have a higher risk of premature death due to epilepsy, more so than in other severe epilepsy syndromes,” says Björn Bjurulf, a pediatric neurologist at Queen Silvia Children’s Hospital in Gothenburg.
What is your research about?
“I have conducted a population-based study in Sweden focusing on DS, exploring its psychosocial impacts and quality of life. This includes examining children’s sleep patterns, behavioral challenges, intellectual capabilities, and adaptive skills – their ability to independently handle everyday situations and perform everyday activities.”
Advancements in early diagnosis
What are your research’s key findings, and what practical impact could they have?
“Knowledge about DS seems to have increased in Sweden, as evidenced by more children being diagnosed over the past ten years. Diagnosis is now occurring earlier, and treatments have advanced. According to parents several factors can worsen the situation, beyond the already known trigger of increased body temperature. Families have adopted numerous strategies to prevent epileptic seizures,” says Björn Bjurulf, and continues:
“Sleep and behavioral issues were common. Apart from a significant number with intellectual disability, our research indicates that nearly all these children face challenges in adaptive behavior, particularly in communication. It’s crucial to assess intellectual, adaptive, and behavioral aspects to fully support and understand these children. Our findings also confirm the high risk of epilepsy-related mortality, highlighting the need for parental awareness.”
Gaining a deeper insight
What has been the most rewarding and challenging aspect of your PhD project?
“I have gained a deeper understanding of the profound impact severe epilepsy syndromes have on the entire family. It’s crucial to look beyond just the epileptic seizures, exploring the broader aspects of life. It has been particularly challenging to witness the intense struggles faced by many of these families.”
Text: Jakob Lundberg