Epilepsy Awareness Week
Today marks the start of Epilepsy Awareness Week with activities going on around the country raising awareness and funds for research. Approximately 600,000 people in the UK have epilepsy and 87 people every day will be diagnosed with it (Epilepsy Action). Did you know that St Valentine is the patron saint of epilepsy and that Roman Emperor Julius Caesar and the artist Vincent Van Gogh had epilepsy?!
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 someone has had more than one seizure, and doctors think it is likely they could have more. 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.
What are epileptic seizures?
Electrical activity is happening in our brain all the time, as the cells in the brain send messages to each other. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This causes a temporary disruption to the way the brain normally works. The result is an epileptic seizure.
There are many different types of seizure. What happens to someone during a seizure depends on which part of their brain is affected. During some types of seizure the person may remain alert and aware of what’s going on around them, and with other types they may lose awareness. They may have unusual sensations, feelings or movements. Or they may go stiff, fall to the floor and jerk. For more on the different types of seizures, see the Epilepsy Action website
What causes epilepsy?
Sometimes, doctors can find a clear cause for a person’s epilepsy. Possible causes of epilepsy include:
- A brain infection, such as meningitis
- Severe head injury
- Problems during birth which caused the baby to get less oxygen
However, in over half of all people with epilepsy, doctors don’t know what caused it. Some may have a family history of epilepsy, suggesting that they may have inherited it. Scientists are trying to find out more about how epilepsy might be inherited.
The main way doctors diagnose epilepsy is by taking a detailed description of the seizures. They may also arrange for some tests to help give them more information about the possible type and cause of the epilepsy. This can also help rule out any other conditions that could be causing seizures. These tests can include blood tests, an EEG (recording of the brainwaves) and brain scans. But there isn’t a single test that can prove if someone does or does not have epilepsy.
Can epilepsy be treated?
The main treatment for epilepsy is epilepsy medicines. These are sometimes called anti-epileptic drugs or AEDs. The medicine doesn’t cure epilepsy but helps to stop or reduce the number of seizures. If epilepsy medicine doesn’t work well for someone, their doctor might suggest other types of treatment – these can include brain surgery, another type of surgery called vagus nerve stimulation, and a special diet called the ketogenic diet which is sometimes used for children.
There are some great websites focusing on epilepsy giving advice, support, training and information. They also include information for children and schools explaining the different types of seizures through the eyes of children (https://www.epilepsy.org.uk/info/children) as well as the not so common question of ‘can I go sky diving if I have epilepsy’!
Epilepsy Society – https://www.epilepsysociety.org.uk/
Young Epilepsy – https://www.youngepilepsy.org.uk/
Epilepsy Action – https://www.epilepsy.org.uk/
Epilepsy Research UK – https://www.epilepsyresearch.org.uk/
Epilepsy Scotland – http://www.epilepsyscotland.org.uk/
How can Liferaft help?
Within Liferaft there are many features to support collection of information that can help those with epilepsy and those looking after them.
- Add a diagnosis of epilepsy
- Describe each different type of seizure experienced
- Use the seizure tracker to record each seizure, using notes to give more detailed information.
- Keep a record of all tests and the results
- Keep a record of all consultations and what was discussed.
- Add medications including emergency meds
- Create a goal related to reducing seizure frequency
- Share information with your doctor, family friends
Sharing the information with health, care professionals will help ensure individualized treatment and care options can be developed.
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