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Living with epilepsy

Being diagnosed with any illness can be a shock, and everybody reacts differently. For some people, a diagnosis of epilepsy is a relief as it gives a name to what has been happening to them. Others will feel scared and upset or angry. All of these reactions are normal. Coming to terms with your diagnosis will take time, but with planning, most difficulties can be overcome.

Having epilepsy should not take over your life, but it needs consideration. Learning more about your epilepsy can help you and your doctors make the right choices for you.

If you have any problems or questions, please discuss them with someone, either your GP, an epilepsy support helpline or our specialist epilepsy nurses.

You can find out more about living with epilepsy on the NHS website.

Sources of support

National support

External organisations that offer further information and support:

  • Epilepsy Society
  • Epilepsy Action
  • SUDEP Action, a charity raising awareness of epilepsy risks and tackling epilepsy deaths, including sudden unexpected death in epilepsy (SUDEP). Services include bereavement support and counselling.
  • Young Epilepsy, supporting children and young people with epilepsy
  • Women with epilepsy - this is a website covering maternity considerations for people with epilepsy - from pre-conception, throughout pregnancy, and following the birth.

Local groups

  • Epilepsy Action help to run support groups, which people may find helpful. These are largely run by volunteers, so they may be subject to change. There is not currently a group running in Southampton, but if this changes Epilepsy Action will update their list. There are some groups registered elsewhere in the South of England and there are online groups that people can apply for https://www.epilepsy.org.uk/support-groups

Resources for people with a learning disability

  • Find your local community learning disability team here.