We have created a number of resources designed to enhance your knowledge about epilepsy and issues such as the importance of medication adherence, driving rules for people with epilepsy, drugs and alcohol, contraception and pregnancy, mood, travelling, and how to make wise choices and live well with epilepsy.
You can use the checklist below to help you prepare for transitioning over time.
The idea is to help you understand your medical condition and how to manage it before you are transferred from the children's healthcare system to the adult setting. This process is carried out over a number of years.
1. Understanding your own diagnosis
- Complete the Personal Epilepsy Profile with your treating doctor to help you understand your epilepsy diagnosis
- Ensure you have a First Aid Seizure Management Plan completed by your treating doctor
- Know the names and doses of your current medications
2. Understanding epilepsy
- Living Well With Epilepsy (educational video for teenagers and young adults - 10 mins).
- EpApp (free mobile App with teen-relevant information and features including seizure diary and medication reminders).
- Transition information and checklists (www.trapeze.org.au)
3. Understanding how the adult healthcare system works
- Have a local GP you feel comfortable with.
- Know the names and contact details for the clinicians you will transition to in the adult health service.
- Have your own Medicare card, Health Care card, and know your private health insurance details.
- Ask your paediatric doctor to assist with the transfer of your medical information to the adult treating clinician.
Education | Employment
- Some teenagers with epilepsy can get extra assistance for the school certificate and higher school certificate exams. For more information and to see if you are eligible, visit the NSW Education Standards Authority website.
- Talk to your School Counsellor or Careers Counsellor about education and career choices.
- For more information about further education, contact the following service providers:
- Many people with epilepsy have fulfilling and challenging careers.
- When considering a career, talk to your parents and School Counsellor about what might be right for you.
- Also think about whether you would be safe if you were to have a seizure in that working environment. For example, it would be safe to be a school teacher, but it may not be possible to be a pilot.
People are discriminated against for a number of reasons. This is not acceptable. If you find that you are being discriminated against you can contact:
- Anti-discrimination board: This is a helpful website, talking about your rights and how to make a complaint.
PENNSW has developed a smartphone and tablet App for teenagers with epilepsy and their parents/carers.
EpApp provides the following features:
- Epilepsy education for teenagers
- Personal Medical profile
- Medication alerts/reminders
- Seizure diary
- Seizure Statistics
- Mood support information and direct-dial to support lines
Personal medical profile
You can fill in this Personal Epilepsy Profile with the assistance of your Doctor and use the information to complete your personal profile within the App.
Download the App free from Apple and Android App stores.