Living with epilepsy presents unique challenges that require thoughtful solutions to ensure safety and independence. With approximately 250,000 Australians affected by epilepsy, creating an environment that supports their physical, emotional, and social well-being is essential. At Kangaroo Care, we believe individuals with epilepsy must receive holistic, person-centered support that focuses on the importance of safety and empowerment in everyday life.
Understanding Epilepsy: A Multidimensional Approach
Epilepsy is a neurological condition characterized by recurrent seizures, which can range from brief lapses of attention to severe convulsions. While medical management can significantly control symptoms for many, about 30% of individuals experience drug-resistant epilepsy.
Myths About Epilepsy
- Myth: All epileptic seizures involve convulsions
Not all seizures are tonic-clonic or convulsive. There are over 40 types, including brief muscle twitches, disorientation, or momentary loss of awareness – far beyond what’s often portrayed in the media.
- Myth: Epilepsy is permanent
Epilepsy isn’t always lifelong – 70% of people can become seizure-free with medication, and some childhood cases are outgrown. For many, the condition may be considered resolved after a decade without seizures and five years off medication.
- Myth: Epilepsy is a mental illness
Epilepsy is not a mental illness, though seizures can sometimes be mistaken as such. However, individuals with epilepsy, like others, may experience mental health conditions like anxiety or depression.
- Myth: People with epilepsy can’t drive
Individuals with epilepsy can drive if their seizures are well-controlled with medication or if they meet the requirements set by their state’s driving authority.
- Myth: Restraining helps during a seizure
Restraining someone during a seizure can cause harm and doesn’t stop it. Seizures run their course naturally. Seizure first aid varies by type and should focus on safety.
- Myth: Prevent tongue swallowing during a seizure
It’s impossible to swallow your tongue during a seizure. Never put anything in the person’s mouth – it can cause serious injury to them and harm you as well.
- Myth: Seizures always require hospitalisation
Most seizures don’t need a hospital visit. Rest and recovery at home, work, or school are usually enough. If unsure or it’s a stranger, calling an ambulance is recommended.
Tips for a Safe Environment
- Seizure-Proofing the Home
- Soft Furnishings: Use padded furniture and soft flooring to minimise injury risks during seizures.
- Kitchen Safety: Install stove guards and avoid cooking unsupervised if seizures are uncontrolled.
- Bathroom Modifications: Opt for showers over baths to reduce drowning risks, and install grab bars for stability.
- Lighting Adjustments: Use non-fluorescent lighting to minimise the risk of photosensitive seizures.
- Emergency Preparedness
- Keep an updated emergency plan accessible, detailing seizure triggers, medical contacts, and first-aid steps.
- Provide family members or housemates with seizure-response training, including the importance of staying calm and ensuring the person’s safety without restraining them.
- Encouraging Independence
- For those living alone, technology like seizure-detection devices and wearable alerts can notify caregivers or emergency services when help is needed.
- Encourage participation in community activities to reduce isolation and promote confidence in managing epilepsy.
Promoting Awareness and Inclusion
One of the barriers people with epilepsy face is societal misunderstanding and stigma. Initiatives that aim to educate communities, schools, and workplaces about epilepsy ensure they are equipped to support individuals effectively. Schools and employers can create inclusive policies that accommodate unique needs, such as flexible schedules and safe spaces.
Looking Ahead: Supporting Independence
Advancements in technology and research are paving the way for more effective epilepsy management. Tools like seizure trackers, cognitive-behavioural therapy, and wearable safety devices are instrumental in promoting autonomy. Furthermore, ongoing community education will ensure greater acceptance and inclusion for individuals with epilepsy.
Kangaroo Care is committed to fostering environments that prioritise safety, dignity, and independence. By addressing both physical and societal challenges, we aim to improve the quality of life for those living with epilepsy in Australia and beyond.
