Epilepsy Awareness Week runs from 24th to 29th May and to support this we’re highlighting some of the issues around this hidden disability.
At Living Options Devon we are committed to supporting people with hidden disabilities, and Epilepsy is one of these often invisible conditions.
So what is Epilepsy?
Epilepsy is a condition that affects the brain. When someone has epilepsy, it means they have a tendency to have epileptic seizures. Anyone can have a one-off seizure, but this doesn’t always mean they have epilepsy. Epilepsy is usually only diagnosed if a doctor thinks there’s a high chance that the person could have more seizures. Epilepsy can start at any age and there are many different types. Some types of epilepsy last for a limited time and the person eventually stops having seizures but for many people, epilepsy is a life-long condition.
You could be the 1 in 100
Epilepsy is a very common neurological condition and is one of the most common in the world.
- 600,000 people in the UK are affected by Epilepsy. Significantly more compared to:
- only 145,000 who have Parkinson’s disease
- only 130,000 who have Multiple Sclerosis (MS)
- Every day over 85 people in the UK are diagnosed with epilepsy
- 1 in 100 people in the UK will have epilepsy at some point in their life
What causes Epilepsy?
Epilepsy can be caused by physical differences or changes in the brain:
- Brain damage from an accident or illness
- Brain tumours
- Brain development, genetics, or a birth defect
Are there other types of seizures?
Yes. Many people who have epilepsy also have non-epileptic or ‘functional’ seizures. These are fits or episodes that can appear to be epileptic seizures but are in fact caused by psychological conditions such as trauma. This type of seizure is common in countries that have experienced war.
Misconceptions about epilepsy
Not every person who has epilepsy is light-sensitive and is affected by flashing lights. Putting a spoon in the mouth of a person having a seizure is dangerous, do NOT put anything in their mouth. Not everyone who has a seizure loses consciousness and convulses or twitches. Not everyone who is diagnosed with epilepsy will have it for life. If you have epilepsy you may be able to continue to do normal things such as driving. Epilepsy is not a mental illness.
- Only 1 in 100 people with epilepsy are affected by flashing lights
- There are over 40 different types of epilepsy
- 70% of people with epilepsy will become seizure-free with medication
- Some people who have not had a seizure in 10 years have been able to stop taking epilepsy medication
What to do when someone has a seizure
If a person collapses and appears to be having a seizure:
- Do NOT restrain them
- Do NOT put anything in their mouth, including food or drink
- Remove any nearby object that could cause the person an injury.
- Cushion their head
- Check the time and make a note of when the seizure started and ended
- Look for a medical bracelet or ID card which may have medication or emergency contact information on it
- When the jerking has stopped put them on their side and stay with them, and reassure them, as they come round
- After someone has a seizure they can be tired, confused or fearful, let them recover in their own time.
When should I call an ambulance if someone has a seizure?
Call an ambulance:
- If the seizure lasts longer than 5 minutes.
- If you know it’s their first seizure
- If they are seriously injured
- If they have trouble breathing
You can follow a short epilepsy first aid course to learn what to do here at Epilepsy Action.
The impacts of having epilepsy: The need for greater awareness
The impacts of a person having epilepsy are wide-reaching and affect the individual, their families, carers, friends, and colleagues.
A person with epilepsy can suffer from anxiety from not knowing when they might have their next seizure. They may worry about collapsing or losing bladder control during a seizure in a public place or workplace if this happens with their seizures.
Family or carers can suffer anxiety and worry about an epileptic person in their care or if they have a child with epilepsy. They can worry about a child riding a bike or swimming and stop their child from experiencing these normal activities.
Epilepsy can affect a person’s work or career. The anxiety they may experience can cause them to limit their choices of work or their progression within their career. Some employers can treat employees differently if they know they are epileptic, discriminating against them, even if it is unintentional. Currently, in 2022, the UK armed forces still force any member who experiences an epileptic seizure to leave military service, even if the person is capable of performing a non-combat role.
Importantly, the carers of people with epilepsy often go unnoticed and unsupported. It can be extremely hard to be the carer of a person with epilepsy. Even if a parent or partner doesn’t consider themselves to be a carer, they can still experience significant anxiety and trauma resulting from the seizures of the person they care for. Also, carers are holders of important clinical information. More often than not, the carer is the only person to know exactly what happened before, during, and after a seizure which is vital information for clinical diagnosis.
Hope for the future
While there is still much misunderstanding of epilepsy there continues to be a growth in research and treatment of this hidden disability. Medical clinicians and academic institutions around the world are performing more research, creating new medicines, and advanced technologies that can improve the diagnosis and treatment of epilepsy.
If you need support with coping with your condition or caring for a person who has epilepsy please contact us and we can signpost you to support services.
So during this year’s Epilepsy Awareness Week, we hope we have raised awareness of epilepsy. Hopefully, you have learned more about the condition from this article and will feel more comfortable about helping someone with epilepsy. Thank you for reading.
Local Epilepsy Support
- Epilepsy Action Talk and Support Group Exeter, Epilepsy Action Talk and Support Group Torbay. More information: virtual and in-person groups
- NHS Exeter Children and Young People’s Epilepsy Services
- Learning Disability Epilepsy Nurse Acute Care Liason Service – Torbay
What is epilepsy?, Epilepsy Action
Myths about epilepsy, Epilepsy Foundation
Epilepsy First Aid poster, Epilepsy Action
Parkinson’s information for journalists, Parkinsons.org
MS in the UK, MS Society