While Australian researchers pave the way in epilepsy care, the results show the important burden for caregivers and parents with children living with serious epilepsies.
Sydney,, February 28, 2025 / PRNEWSWIRE / – Australian results in patients with developmental and epileptic encephalopathies (DEES), the most serious group of epilepsies, highlight the important charge and responsibility for parents’ disease and caregivers with children with dees.[1] The DEES are characterized by crises and frequent epileptic activity on the layout of the brain waves (EEG) associated with the slowdown or the regression of development.[1] Dees affects one in 600, which is equivalent to 300 newly diagnosed children Australia annually.[2]
Professor Ingrid Scheffer ao, president of pediatric neurology, University of Melbourne said: “Our research has paved the way for better treatment, care and management of children and adults with the most serious epilepsies called Dees researchers. Australia Work tirelessly towards a common objective of a day – a remedy. However, although the future is brighter for people living with a DEE than ever before, there is a huge disparity in the support received by caregivers, parents and families, especially children and adults. “”
In March, Australia The epilepsy community gathers for March purple And to raise awareness and fund to support the “unknown purple heroes” of epilepsy, parents, caregivers and wider families of children with dees.
Research shows that the majority of parents and caregivers with children with dees, mainly mothers, report constant anxiety, poor mental health, a financial burden and a restriction to social life, due to the responsibility and the burden of the very complex care of their child.[1] A little more than half (55%) of caregivers say they have access to a mental support / family support service to parents or children’s brothers and sisters living with the condition.[3]
“When a child is diagnosed with a DEE, their families experience understandable sorrow and need intense and continuous support as the disease evolves. Parents and families quickly turn into full -time caregivers, learning their child’s condition to work with a multidisciplinary team to provide highly specialized care.
Carol IrelandCEO and CEO, Epilepsy Action Australia, said: “The care of a child with severe epilepsy is often a 24/7 responsibility. This can be insulating, leaving parents and caregivers with little or no time for themselves when it comes to working, relationships and global management of daily life. This year, we want to recognize and celebrate our heroes of purple – Australian parents, parents, their children.”
Lachy Gillespie, alias Purple Wiggle said: “Epilepsy is part of my family’s life for as long as I remember. My brother has lived with epilepsy since birth. His daughter, my niece, was diagnosed with severe epilepsy known as Dravet’s syndrome as a baby.”
“Violet is a very special color for me – like the color of the consciousness of epilepsy. In March, join me to help you March purple To raise awareness of epilepsy, to recognize our little -known purple heroes and collect funds for essential epilepsy services at the national level to support not only people living with epilepsy but their parents, their caregivers and their families. “”
GRAEME ShearsCEO, Epilepsy Foundation, said: “People affected by epilepsy have always shown incredible strength and resilience, despite the challenges they face. These are the qualities of heroes. Make March Purple is to shine light on these people and to bring the epilepsy out of shadows. This year, we are determined to extend this light to the little -known heroes who make a lot of care and to support people.”
March purple is an initiative that increases awareness and funds to support people living with epilepsy Australia. Epilepsy Action Australia and The Epilepsy Foundation encourage you to be a purple hero and to take up a purple challenge to show your support. All funds collected are given to the development and provision of vital epilepsy support services, education, training and research. To find out more about Making 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, IE, Zuberi, S., Mefford, HC 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. Dépipion of concepts behind “epileptic encephalopathy” and “epileptic encephalopathy”. EUR J Paediatr neurol. 2020; 24: 11-4.
3. Kelada L, Best S, Pierce K, et al. Respond to the needs of caregivers in the provision of health services to children with developmental and epileptic encephalopathies. EUR J Paediatr neurol. 2025. DOI: 10.1016 / J.EJPN.2025.01.007.
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Source Make March Purple
