New study reveals severe lack of support for Dravet Syndrome carers
3 December 2024 – A UK-wide study exploring the impact on caregivers of those living with Dravet Syndrome, a rare, life-limiting form of epilepsy, has revealed that 90% were unable to continue working due to the sense of ‘constant struggle’ and impact on their mental well-being and quality of life. The findings also showed that only 1 in 10 families were offered family counselling as a means of working through the life-changing effects of the condition.
The study was conducted by independent charity Dravet Syndrome UK and a team of leading researchers at the University of Glasgow including Erin Freeman-Jones, Professor Andreas Brunklaus and Professor Sameer Zuberi and has been published in the European Journal of Paediatric Neurology. Receiving responses from over 165 families, the study revealed stark discrepancies in the level of support offered to families throughout their journey.
It’s not uncommon for individuals living with Dravet Syndrome to have multiple seizures day and night, in some cases hundreds. As well as seizures, Dravet Syndrome causes learning disability and a spectrum of associated conditions, which may include autism, attention-deficit hyperactivity disorder (ADHD), challenging behaviour, and difficulties with speech, mobility, feeding and sleep. There is also a much higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other epilepsies.
Despite the risk of sudden unexpected death in epilepsy (SUDEP) among those living with Dravet Syndrome, just under half (37%) of families reported that their neurologist had never discussed the associated risks of SUDEP with them. This saw 77% of families wishing more discussions were had with medical professionals to prepare them, particularly given that 25% of them had experienced six or more emergency admissions within the past two years. These findings emphasise a clear need for earlier and better intervention and support for families.
Due to the complex needs of individuals living with the condition, caregivers were found to have very little time to themselves or to socialise, resulting in high levels of anxiety, depression, and fatigue. This was also reported as having a knock-on effect on the mental well-being of siblings within the family.
Richard and Alison, a Port Talbot couple whose seven-year-old son Ethan lives with Dravet Syndrome, witnessed his first seizure at just four months old. Since then, they have done all they can to spread awareness about the effect that Dravet Syndrome has on Ethan, on themselves as his caregivers and his sister Lucia.
Richard said: “Dravet Syndrome affects literally every aspect of our lives. One of us has to sleep with Ethan every night and we live in constant fear of SUDEP as many children living with Dravet don’t reach adulthood. How do you explain to others the feeling as a parent of putting your child to bed every night and not knowing if he will wake in the morning?”
Upon receiving a diagnosis for Ethan at 14 months old, Richard described how time stood still and their “whole world fell apart.”
He said: “We had no idea how to process the news or how we would even begin to cope with keeping Ethan safe and holding our family together. We were literally falling apart, emotionally, mentally and physically exhausted. We couldn’t even talk about it without getting consumed by grief, guilt and emotion, we were completely and utterly devastated, it turned our world upside down.”
Galia Wilson, Chair of Trustees, Dravet Syndrome UK, says: “These findings demonstrate the devastating impact that Dravet Syndrome can have on those affected and their families. At Dravet Syndrome UK, we are proud to be empowering families to share their experiences so that we can bridge the gaps in understanding through research and work with families and health and care professionals to drive meaningful change.”
About Dravet Syndrome:
Dravet Syndrome is a rare, life-limiting and life-long form of epilepsy, occurring in around 1 in every 15,000 births in the UK. As well as severe, treatment-resistant seizures, Dravet Syndrome causes intellectual disability and a spectrum of associated conditions, which may include autism, attention-deficit hyperactivity disorder (ADHD), challenging behaviour, and difficulties with speech, mobility, feeding and sleep. In around 85% of cases, Dravet Syndrome is caused by a mutation in a gene known as SCN1A.
About Dravet Syndrome UK:
Dravet Syndrome UK (DSUK) is an independent charity dedicated to improving the lives of those affected by Dravet Syndrome through support, education and medical research.
We do this by:
- Supporting families affected by Dravet Syndrome emotionally, practically and financially
- Raising awareness and understanding of Dravet Syndrome among medical professionals
- Funding medical research focused on the unmet needs of families living with Dravet Syndrome
Visitwww.dravet.org.ukfor more information about Dravet Syndrome and how DSUK is helping to bring hope to families living with this condition.
