Whether you’re a parent of a child with epilepsy, or a young person with the condition; it can be worrying to think about the risks of epilepsy. But knowing about risks, discussing them with others (clinicians, family, teachers etc), and taking steps to reduce them, can help you navigate living with epilepsy.
Having a long term condition like epilepsy doesn’t mean you can’t take part in everyday activities, but it does mean you might need to take some extra steps to make sure you keep as safe as possible.
Moving from Paediatric to Adult services?
Developing independence as you get older is important, and living with epilepsy can make it harder to feel like others in your social group. Moving from paediatric (children’s) to adult epilepsy services happens at the same time as many other changes linked to being a young adult.
It is important to know how to balance gaining independence with managing risk, so you can make informed choices to help you stay safer:
- Medication side effects: be open with your clinician to help find a balance between seizure control and minimising any side effects.
- Medication adherence: taking your epilepsy medication regularly as prescribed can help seizure control and help reduce risk of injury or death.
- Driving a vehicle: to do this seizure control will be vital, and taking positive steps to self-manage your epilepsy is the first step.
- Alcohol and substance use: can affect your epilepsy and how your medication works; which could have serious consequences.
- Sex and Contraception: can be discussed with your clinician. It’s important you feel able to speak openly with them and ask any questions you have, to help you make informed choices about your epilepsy.
eQuip is a resource developed by young people to share their experiences and questions to help you make informed choices. Click here to access eQuip.