March 26th is Purple Day...a day dedicated to Epilepsy Awareness worldwide.
March 26th marks Purple Day, dedicated to breaking the stigma of the condition. The idea was first created in 2008 by a young girl called Cassidy Megan, motivated by her own struggles with epilepsy; her goal was to create a sense of community and break some of the taboos faced by people living with the condition. It has now become an International phenomenon, and in honour of the day, I wanted to debunk some of the myths associated with epilepsy in the form of Frequently Asked Questions:
What is Epilepsy?
Epilepsy is a common brain condition that causes the affected person to have seizures, which are caused by sudden electrical discharges in the brain.
Is it common?
Yes. It is estimated that epilepsy affects 50 million people worldwide; approximately 5 million live in the Caribbean, North America and Latin America, according to PAHO. Local estimates are that approximately 40,000 people with epilepsy live in Trinidad and Tobago. PAHO also states that 2 million new cases occur every year in the world, and that 80% of the global burden of epilepsy corresponds to developing countries.
What causes epilepsy?
In most cases (about 2 out of 3 people), the cause of epilepsy is unknown. In others epilepsy can be caused by certain conditions that can affect the brain such as strokes, traumatic brain injury, brain infections or tumors, certain genetic disorders, or other neurologic diseases eg Alzheimer’s disease.
If a person has a seizure, does that mean they have epilepsy?
Not always. Sometimes a person can have a seizure due to other medical problems, such as a high fever (known as febrile convulsions) in young children, alcohol or drug withdrawal, or a low blood sugar.
Is epilepsy contagious?
No, epilepsy is not contagious – you can neither catch it from someone living with epilepsy nor pass it on to someone else.
How is epilepsy diagnosed?
Epilepsy is usually diagnosed after the person has had 2 or more separate unprovoked seizures separated by at least 24 hours (or at times after one unprovoked seizure if there is a high risk for more). A person who has a seizure for the first time should seek medical attention and speak to a medical practitioner. The doctor will take a detailed history, ideally including an eye-witness account of the event, in order to look for the cause of the seizure, at times together with basic blood tests such as a blood sugar and electrolyte levels. Many people who have seizures may have more specific tests such as an electrocardiogram (ECG) or heart rate recording, and an electroencephalogram (EEG), which is a recording of the brain’s electrical activity. If indicated, there may also be brain imaging such as a CT or MRI brain scan performed.
How long do seizures usually last?
It varies, but usually a seizure lasts anywhere from a few seconds to a few minutes, depending on the type of seizure.
What are the major types of seizures?
Seizures are classified into two main groups:
Generalized seizures: these affect both sides of the brain
Focal seizures: these affect just one area of the brain.
A seizure can manifest in different ways, depending on where it originates in the brain. At times the affected person may look confused, disoriented or staring. Other seizures can cause a person to fall, have jerking or shaking movements and be unaware of their surroundings.
How is epilepsy treated?
According to PAHO, about 70% of people living with epilepsy can be treated with basic medication, known as anticonvulsants. Only about 10% require a more specialised approach for example a specific diet (called the ketogenic diet) or surgery. Around 20% of cases are more complex and may not respond fully to treatment; in these cases, the goal may be to reduce the number and severity of seizures as much as possible. Essentially if seizures are not being well controlled, it’s important to talk further with your medical practitioner, who may need to refer on for more specialist assessment by a neurologist or epilepsy specialist.
Will someone with epilepsy have to take medication for life?
Not necessarily. The goal of treatment is to achieve freedom from seizures, so it is important to take prescribed medication and be followed up regularly. In most cases, once a person with epilepsy has had no seizures for 2 years, the doctors will then try to wean off anticonvulsant therapy, if possible.
How can I help someone having a seizure?
If you encounter someone having a seizure, the basic first aid principles (according to Epilepsy Action) are outlined by the word ACTION:
A – Assess the situation. You may need to move the person away from any danger or potential harm eg sharp edges or hot surfaces.
C – Cushion the head, especially of the person is not unconscious and/or experiencing shaking or jerking. You can use a rolled up towel, pillow or blanket to cushion their head.
T – Time the seizure. It can seem to go on a lot longer than it actually does, so it’s helpful to time the actual seizure duration my checking your watch, phone or clock.
I – Identification. Some people living with conditions such as epilepsy or diabetes wear MedicAlert bracelets or necklaces, so it is useful to check for this if you don’t know the person.
O- Over. Once the jerking and shaking period (known as the convulsive phase) is over, it’s most helpful to put the person to lie on their left side, bending the arm and leg that’s uppermost, and placing their upper hand under their cheek (see picture). This is called the recovery position, and it’s safest for the person’s airway.
The Recovery Position:
N- Never try to force the person to sit up or try to lift them while in a seizure. You should also never try to put objects like a finger or spoon in the person’s mouth. During a seizure the person has less control of their airway, so trying to force things into the mouth can block the airway further, and you may get injured in the process. It is much safer to place them in the recovery position, as above.
You should call an ambulance or take the affected person to hospital if:
It’s their first seizure
The person has sustained an injury during the seizure
The person has epilepsy but has had a seizure lasting more than 5 minutes
The person experiences more than one seizure in 24 hours
The person is taking longer than usual to recover from their seizure
You are concerned.
Can someone with epilepsy lead a full life?
Yes. Most people with epilepsy can have full lives – many have been successful in careers such as medicine, sports, entertainment and other professions. People with uncontrolled seizures or severe types of epilepsy may find it more challenging to go to work or school regularly – that’s why it’s important to work with your doctor to achieve the best control of seizures.
Can someone die from epilepsy?
Most people with epilepsy have a full life. We know that taking prescribed medication, having regular follow up and the best possible seizure control while living safely all reduce the chances of an epilepsy-related death. However, the risk of early death is higher in some cases. Factors that increase the risk of an early death include: a tendency to long seizures, lasting more than 5 minutes (known as status epilepticus), not taking prescribed medication regularly, having life-threatening injuries or falls associated with the seizure, or a significant underlying medical condition causing the epilepsy (eg a tumour). Rarely people with epilepsy can experience what is known as SUDEP (Sudden Unexpected Death in Epilepsy). SUDEP is not well understood but experts suspect it may sometimes be due to a change in heart rhythm during a seizure. The risk of sudden death is higher for people with major uncontrolled seizures, so it is important to take prescribed medication regularly and on time, together with regular follow-up.
Where can I find more information?
There are lots of Epilepsy organizations and support groups worldwide – they have useful further downloadable information can be obtained. I’ve listed a few below:
Epilepsy Foundation: www.epilepsy.com
Purple Day: www.purpleday.org
Epilepsy Action: www.epilepsy.org.uk
Epilepsy Society: www.epilepsysociety.org.uk
Seizure Awareness Foundation of TT (SAFTT): sattnt@yahoo.com (email), #SAFTT, #epilepsyawareness
Be safe,
Paula
Dr Paula Robertson is a busy mom and a paediatrician with over twenty years' experience working with young people and their families. You can find out more at www.paulathedoctormom.com.
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