New drug could change lives of children with Dravet syndrome
A new drug is being trialled which could change the lives of children who have a severe neurological condition which causes serious seizures.
Demelza currently supports 12 children who have Dravet syndrome, a rare and complex condition which causes prolonged, frequent and difficult to control seizures, alongside a spectrum of associated health challenges, which vary from person to person.
I have seen a huge variation in how the children Demelza supports are affected, particularly in the types and frequency of seizures they experience. Some children have seizures rarely, while others face them every single day.
Dravet is a rare, life-long condition - around one in every 15,000 babies in the UK are born with it - and without effective treatment, uncontrolled seizures can be incredibly dangerous for children.
The new drug being trialled, zorevunersen, is given as an injection in the spine which travels through spinal fluid to manage the faulty gene affecting the brain, the underlying cause in most cases of Dravet. Young patients currently taking part in trials have seen up to 90% fewer seizures while on the repeat doses of the new drug.
For those living with daily seizures, any improvement would be truly lifechanging, not only for the children themselves, but also for their families.
The impact goes far beyond health. It would be socially transformational. Many children feel extremely tired after a seizure, which means they often miss out on activities and interactions with others. Reducing their seizure burden would allow them to participate more fully, engage with their surroundings, and enjoy things other children take for granted.
As children with Dravet grow older, the unpredictability of when and where a seizure might occur can also affect their confidence and self-esteem, so improved control could make a profound difference to their wellbeing.
While more research is needed to check how effective the treatment is before it can be widely rolled out, these initial results are very promising. As a local children’s hospice with years of experience of Dravet, we support all research into the condition and welcome this news.
Helen Rolls, Demelza Lead Nurse
"For those living with daily seizures, any improvement would be truly lifechanging.”
