EPILEPSY COMMUNITY CALLS FOR MORE SUPPORT FOR THE UNSUNG HEROES OF EPILEPSY

While Australian researchers are paving the way in epilepsy care, findings show the significant burden on carers and parents with children living with severe epilepsies.

SYDNEY, Feb. 28, 2025 /PRNewswire/ -- Australian findings into patients with developmental and epileptic encephalopathies (DEEs), the most severe group of epilepsies, highlight the significant burden and responsibility of the condition on parents and carers of children with DEEs.^[1] DEEs are characterised by seizures and frequent epileptic activity on brainwave tracings (EEG) associated with developmental slowing or regression.^[1] DEEs affect one in every 600 people, equating to 300 newly diagnosed children in Australia annually.^[2]

Professor Ingrid Scheffer AO, Chair of Paediatric Neurology, University of Melbourne said, "Our research has led the way for better treatment, care and management of children and adults with the most severe epilepsies known as DEEs. World-leading researchers here in Australia are working tirelessly towards a common goal of one day – a cure. However, while the future is brighter for people living with a DEE than ever before, there is a huge disparity in support received by the carers, parents, and families, particularly of children and adults with DEEs."

This March, Australia's epilepsy community is coming together to Make March Purple and raise awareness and funds to support the 'Unsung Purple Heroes' in epilepsy, from parents, carers, and wider families of children with DEEs.

Research shows the majority of parents and carers of children with DEEs, mostly mothers, report constant anxiety, poor mental health, financial burden, and restriction on social life, as a result of the responsibility and burden of their child's highly complex care needs.^[1] Just over a half (55%) of carers say they had accessed a mental health/family support service for the parents or siblings of children living with the condition.^[3]

"When a child is diagnosed with a DEE, their families experience understandable grief and need intense and ongoing support as the disease evolves. Parents and families quickly turn into fulltime carers, from learning all about their child's condition to working with a multidisciplinary team to provide highly specialised care. This takes a significant toll on parents and carers and highlights the need for considerable ongoing support," said Professor Scheffer AO.

Carol Ireland, CEO and Managing Director, Epilepsy Action Australia, said, "Caring for a child with a severe epilepsy is often a 24/7 responsibility. This can be isolating, leaving parents and carers with little to no time for themselves when it comes to work, relationships, and the overall management of everyday life. This year, we want to recognise and celebrate our purple unsung heroes — the Australian parents, carers, and families – who truly deserve all the support and recognition for the important role they play for their children with DEEs."

Lachy Gillespie, aka Purple Wiggle said, "Epilepsy has been a part of my family's life for as long as I can remember. My brother has lived with epilepsy since birth. His daughter, my niece, was diagnosed with a severe epilepsy known as Dravet syndrome as a baby."

"Purple is a very special colour to me – as the colour of epilepsy awareness. This March, join me to help Make March Purple to raise awareness of epilepsy, recognise our unsung purple heroes, and fundraise for much-needed epilepsy services nationally to support not only individuals living with epilepsy but their parents, carers and families."

Graeme Shears, CEO, Epilepsy Foundation, said, "People impacted by epilepsy have always shown incredible strength and resilience, despite the challenges they face. These are the qualities of heroes. Make March Purple is about shining a light on these people and bringing epilepsy out of the shadows. This year, we are determined to extend that light onto the unsung heroes who do so much to care and support people living with the condition."

Make March Purple is an initiative that raises awareness and funds to support people living with epilepsy in Australia. Epilepsy Action Australia and the Epilepsy Foundation encourage you to be a Purple Hero and take on a Purple Challenge to show your support. All funds raised are donated to development and delivery of vital epilepsy support services, education, training, and research. To find out more about Make March Purple, please go to www.makemarchpurple.org.au.

If you need support, please contact the National Epilepsy Line – 1300 37 45 37 or the National Epilepsy Support Service – 1300 761 487.

References

1.     Scheffer, I.E., Zuberi, S., Mefford, H.C. et al. Developmental and epileptic encephalopathies. Nat Rev Dis Primers 10, 61 (2024). https://doi.org/10.1038/s41572-024-00546-6.

2.     Scheffer IE, Liao J. Deciphering the concepts behind "Epileptic encephalopathy" and "Developmental and epileptic encephalopathy". Eur J Paediatr Neurol. 2020;24:11-4.

3.     Kelada L, Best S, Pierce K, et al. Fulfilling the needs of caregivers in delivering health services to children with developmental and epileptic encephalopathies. Eur J Paediatr Neurol. 2025. doi:10.1016/j.ejpn.2025.01.007.