For Young Readers

Let’s talk about epilepsy

Talking About Epilepsy

It’s natural to feel nervous about telling other people about your epilepsy. You might be worried that they’ll start treating you differently. However, you’ll find that most people will likely just take it in their stride. Around 50 million people have epilepsy worldwide, so there’s a chance that whoever you’re talking to already knows someone with epilepsy.1
In some situations, it’s important to tell people that you have epilepsy. It’s a good idea to tell people that you spend a lot of time with (e.g. girl/boyfriends, close friends, classmates and teachers) that you might have seizures. Make sure they know what your seizures look like and what they should do if you have a seizure.2

You could show them this easy-to read brochure that explains what are the basic things one should do if someone around them has a seizure.

If your school has a nurse or other medical professional on-site, you’ll want to make sure they also know about your epilepsy and how to treat it. Make sure you know about the school rules about epilepsy drugs: where your medication will be kept, how you will access it (including times when the nurse or other medical professional is away/after-school), where you should go if you feel unwell, and the action that the school will take if you have a seizure.4
If you’re invited to take part in an activity which could cause a seizure, like a trip to a video arcade if you have photosensitive epilepsy, you might want to mention your condition2
Some people may have misconceptions about epilepsy which you might have to correct. Different people experience seizures differently, so your experience might be different to that of someone else. When you first talk to someone about your epilepsy, it’s a good idea to pick a time and place when you’re comfortable and where you won’t be interrupted. Remember that epilepsy is only part of who you are and there isn’t anything to be ashamed of.2

Sports

Most people with epilepsy can do most sports. Depending on your seizures, you may need to:5

  • Avoid swimming or doing water sports on your own
  • Wear a helmet while cycling or horse riding Avoid using certain types of gym equipment – ask staff at the gym for advice
  • When taking part in sports, it can be a good idea to let someone like the team coach know that you have epilepsy in case you have a seizure.
  • For swimming and water sports, make sure you tell the lifeguard.6

Speak to your doctor for further information.

Schools And College

Students with epilepsy are protected under the Equality Act 2010. This law aims to make sure you are treated fairly by everyone involved in your education, including trips and exams. To find out more about the Equality Act 2010, you can ring the Disability Rights UK student hotline on 0800 328 5050.7

For some people, having epilepsy won’t affect how well they get on at school or college. For others, their medication can make them feel sleepy or tired (making it more difficult to concentrate), or they might feel confused or tired after a seizure and need time to fully recover. Schools and colleges are required to give you support if you need it, for example your teacher or lecturer could go back over key information that you missed whilst recovering from a seizure.7

If your school or college has a nurse or other medical professional on-site, you’ll want to make sure they also know about your epilepsy and how to treat it. Make sure you know about the school or college rules about epilepsy drugs: where your medication will be kept, how you will access it (including times when the nurse or other medical professional is away/after-school), where you should go if you feel unwell, and the action that the school will take if you have seizure.4

Employment

Whether it’s a part-time or full-time job, people with epilepsy are protected by the Equality Act 2010. This means that employers have to treat you fairly (not discriminate) and support you at work.8

You do not have to tell your employer that you have epilepsy; however, if it is likely to impact your work, it can be a good idea to let them know. If employers are informed that you have epilepsy, they must provide a safe working environment for you and consider making ‘reasonable adjustments’ to accommodate your epilepsy.9
If you are likely to have a seizure at work, it is a good idea to tell the people you work with about your epilepsy and what to do if you have a seizure. This might help you, and them, feel more confident about how to help you if you have a seizure at work.9

Driving As A Young Person

If you’ve had no seizures for at least one year, you can learn to drive a car or motorbike at 17.You may also qualify for a provisional license if the only seizures you’ve had in the past 3 years while you were asleep. You may still qualify for a license if you’ve had seizures that don’t affect your consciousness or driving in the past 12 months. The government guidance can be found here.10,11
You will need to let the driver and vehicle licensing agency (DVLA) know about your epilepsy when you apply for your provisional driving licence (which you can do here), even if you are not currently having seizures. The DVLA will then ask you to fill in forms relating to your epilepsy and may need to contact your doctor for further information before they send you your licence.10

Pregnancy

Some anti-epileptic drugs are not recommended when pregnant. Please consult with your doctor or pharmacist to ensure you get the appropriate treatment.12,13

Drinking

Alcohol can make some of the side effects of anti-epileptic drugs worse and some anti-epileptic drugs can increase the effects of alcohol. Check the information leaflet that comes with your drugs which should say if alcohol is not recommended. Please consult your doctor or pharmacist if you are not sure.12

Young Readers

Emma’s Story

Emma likes playing sports at school. She also enjoys being with her friends. But most of all, Emma LOVES to just be a young girl!

References:

  1. World Health Organization. Epilepsy. Available from: https://www.who.int/news-room/fact-sheets/detail/epilepsy (accessed 14 Sept 2020)
  2. Epilepsy Foundation. Talking with Friends and Family. Available from: https://www.epilepsy.com/living-epilepsy/youth/talking-about-epilepsy/talking-friends-and-family (accessed 14 Sept 2020)
  3. NHS. What to do if someone has a seizure (fit). Available from: https://www.nhs.uk/conditions/what-to-do-if-someone-has-a-seizure-fit/ (accessed 14 Sept 2020)
  4. Epilepsy Foundation. Talking with School and Medical Staff. Available from: https://www.epilepsy.com/living-epilepsy/youth/talking-about-epilepsy/talking-school-and-medical-staff (accessed 14 Sept 2020)
  5. NHS. Living with Epilepsy. Available from: https://www.nhs.uk/conditions/epilepsy/living-with/ (accessed 14 Sept 2020)
  6. Epilepsy Society. Sports And Spare Time. Available from: https://www.epilepsysociety.org.uk/sports-and-spare-time#.XZXuKZNKhTZ (accessed 14 Sept 2020)
  7. Epilepsy Society. School, College or University. Available from: https://www.epilepsysociety.org.uk/school-college-or-university#.XZXuXpNKhTZ (accessed 14 Sept 2020)
  8. National Archives. Equality Act 2010. Available from: https://www.legislation.gov.uk/ukpga/2010/15/contents (accessed 14 Sept 2020)
  9. Epilepsy Society. Telling Your Employer About Your Epilepsy. Available from: https://www.epilepsysociety.org.uk/telling-your-employer-about-your-epilepsy#.XIaH65P7RTY (accessed 14 Sept 2020)
  10. Government Digital Service. Epilepsy and driving. Available from: https://www.gov.uk/epilepsy-and-driving (accessed 14 Sept 2020)
  11. Government Digital Service. Medical conditions, disabilities and driving. Available from: https://www.gov.uk/driving-medical-conditions (accessed 14 Sept 2020)
  12. Buccolam PIL. Available from: https://www.medicines.org.uk/emc/files/pil.2768.pdf (accessed 14 Sept 2020)
  13. NHS. Epilepsy and pregnancy. Available from: https://www.nhs.uk/conditions/pregnancy-and-baby/epilepsy-pregnant/ (accessed 14 Sept 2020)
  14. Image credit: Prem-pal-singh in Pexels.

This information is provided as a resource for patients who have been prescribed Buccolam by their doctor or other healthcare professional.

Reporting of adverse events (Healthcare Professionals in the UK)

Adverse events should be reported. Reporting forms and information can be found at: www.mhra.gov.uk/yellowcard or search for MHRA Yellow Card in the Google Play or Apple App Store. Adverse events should also be reported to Neuraxpharm. at: pv-uk@neuraxpharm.com