Awareness-Raising
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Advocacy
About us

We are a non-profit organization dedicated to addressing the medical and social impact of epilepsy through the provision of support, resources, and skills to individuals with epilepsy. Our mission is to empower those affected by epilepsy while advocating for their rights, and raising awareness about this condition. With the help of generous donors and passionate volunteers, we strive to create a community where people with epilepsy can thrive and overcome the challenges associated with epilepsy. Together, we are working towards a future where epilepsy is better understood, stigma is eliminated, and people with epilepsy are empowered to be agents of sustainable development.

Testimonials

Bah Blaise

I have been so impressed at how humanly this organization has treated me—very unlike how I have been treated. Volunteers check on me periodically to ensure that I am doing well. The organization put a roof over my head, supported my business and met some of my basic needs through generous donation. Their care and attention has made to understand that epilepsy isn’t a death sentence and there is hope. 

Leinjung Erica

The resources, knowledge and skills that I have acquired through this organization especially during the workshops for women with epilepsy, have given me the tools to better manage my condition and navigate the unique challenges that women with epilepsy face. I am now more confident in advocating for myself and others, and I am inspired to continue spreading awareness and breaking down barriers surrounding epilepsy. Thank you once again for your dedication to empowering women with epilepsy and for making a positive impact in our lives. Your organization has developed in me a sense of empowerment and a renewed sense of purpose.

Courage Vidzengsi

Living with epilepsy as a woman can often be challenging and isolating, but this organization has shown me that I am not alone in my journey. I am a better epilepsy activist because of the support and resources provided by your organization. Through your guidance, I have learned effective strategies to raise awareness, educate others, and advocate for  women with epilepsy. With this newfound knowledge and confidence, I am determined to make a lasting difference in the lives of those affected by this condition.

Our impact in numbers

Number of People Sensitized across Africa
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Persons with epilepsy assisted
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Trained epilepsy activists in Africa
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Women with epilepsy supported
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Frequently asked questions on Epilepsy

What is epilepsy?

Epilepsy is a disorder of the brain characterized by repeated seizures, also known as convulsions or “fainting fits.3. A seizure or convulsion is a sudden change of behavior due to a temporary disruption of the electrical activity of the brain. Normally, the brain continuously generates small amounts of current called impulses in an orderly pattern. These impulses travel along neurons—the network of cells in the brain—to the whole body via chemical messengers called neurotransmitters. The brain uses these impulses to control the activities of the body, such as muscle contraction to allow us to move around, urination, excretion, the production of saliva in our mouth, and the movement of our eyes. When the brain is damaged, the orderly manner of releasing impulses is destroyed, leading to an excessive, random, and synchronized release of impulses that affect the activities of the body. This is what happens in epilepsy: the brain’s electrical activity becomes excessive, resulting in the different manifestations that we see during a convulsion, like excessive muscle contraction, which causes the body of the person to become stiff and then shake abnormally, foaming in the mouth, urination or excretion, etc. The excessive release of electrical energy may affect their consciousness because the brain is responsible for consciousness.


What causes epilepsy?

Anything that can damage the brain and cause it to start releasing electrical energy excessively and randomly can lead to epilepsy. These include:

Head injury or trauma from road accidents, fights, falls from trees or buildings, etc.

Stroke or brain hemorrhage (bleed) A stroke occurs when there is a sudden decrease in the quantity of blood reaching a particular area of the brain or when a blood vessel carrying blood to an area of the brain ruptures, causing bleeding. This can damage the brain and lead to epilepsy. Stroke is the most common cause of epilepsy in old people.

Brain infection or inflammation, like meningitis and cerebral malaria, especially in children, can cause brain abscesses or pus in the brain.

Brain malformations occur when the brain doesn’t form well.

Brain cancer

Damage to a baby’s brain during delivery or from maternal infections during pregnancy.

Brain diseases, like Alzheimer’s disease

Chronic alcohol or use of drugs like cocaine, tramadol, and marijuana

Complications from HIV/AIDS

Genetic abnormalities

Family history: certain genetic abnormalities that cause epilepsy can be transmitted from parents to children, leading to hereditary epilepsy.

It is important to know that the cause of epilepsy is unknown in half of all cases.

What are the signs and symptoms of epilepsy,

The symptoms of epilepsy are seizures, also known as fits or convulsions. These seizures occur when there is a change in the electrical activity in the brain, and there are several types of seizures depending on the part of the brain involved. Seizures can manifest as loss of consciousness (passing out), unusual jerking or shaking movements of one side of the body, urination or excretion, foaming in the mouth, “grinding” of the teeth, as well as other unusual feelings, sensations, and behaviors. There are many different types of seizures. Generalized seizures occur when the excessive release of electrical energy involves the whole brain, so the whole body is affected. Focal seizures involve only part of the brain.


How is epilepsy diagnosed?

Epilepsy is usually diagnosed based on the history of seizures. Typically, a person is considered to have epilepsy if they have experienced at least two convulsions or seizures that were unprovoked and occurred separately 24 hours apart. There are several things that can provoke or cause someone to have a convulsion when the person does not have epilepsy. These include low blood sugar, high or low sodium in the blood, high or low calcium in the blood, fever in children, etc. Blood tests should be done to ensure that the seizures are not caused by any of the abovementioned things before concluding that the seizures are due to epilepsy. Your doctor will ask you what you can remember and any symptoms you may have before the seizures happen, like feeling strange or any other warning signs. It may be useful to talk with anyone who saw your seizure and ask them what they saw, especially if you can’t remember the seizure. Your doctor may also do tests like blood tests, an EEG (electroencephalogram), and scans of the brain (like a CT scan or an MRI). Even with normal findings on your EEG and brain scans, you may still have epilepsy. But abnormal findings can help classify the type of epilepsy involved. If your child or someone you know has a seizure, it can be helpful to record it on your mobile phone. This can help your doctor make a more accurate diagnosis.

How is epilepsy treated?

There are several different ways to treat epilepsy. The most common way to treat epilepsy is through anti-epileptic medications. Though these medications do not cure epilepsy, most people with epilepsy can stop having seizures with antiepileptic medicines and by avoiding things that can provoke convulsions. The best type of anti-epileptic medication for you will depend on things like how old you are, the type of seizures you are having, and any other medical conditions you might have. Many antiepileptic medicines need blood tests to make sure the levels of medicine in your blood are not too low or too high or cause other medical problems.

Some new treatments for epilepsy include:

Surgery on the area of the brain causing the seizures. Only certain types of epilepsy can be treated with surgery.

Vagus nerve stimulation: nerves in the neck are stimulated by a device placed under the skin.

A strict medically supervised diet in some children with epilepsy is called a ketogenic diet

Medical cannabis, which has been shown in some studies to help people control seizures, Cannabis is only used to treat epilepsy after it has been processed and its medicinal ingredients extracted. Using raw or unprocessed cannabis will worsen your seizures and your overall health.

Is epilepsy caused by witchcraft or being possessed by evil spirits?

No. Epilepsy is a brain disorder characterized by recurrent seizures or convulsions, affecting millions of individuals all over the world. The brain’s abnormal electrical activity is what causes epilepsy.  The causes of abnormal electrical activity which leads to epilepsy can vary, including genetic factors, brain injuries, infections, or structural abnormalities in the brain. The idea that demonic possession or witchcraft causes epilepsy is ignorance. Attributing epilepsy to witchcraft or demonic possession is a misconception which has led to the stigmatization and ill-treatment of those affected. Epilepsy is a medical condition that is treated medically. People with epilepsy are not bewitched or possessed by demons.

Can epilepsy be prevented?

Yes. Up to 70% of all cases of epilepsy can be prevented. This can be done through various measures such as: avoiding head injuries by wearing protective gear during sports, biking or other activities, managing underlying health conditions that may increase the risk of seizures, such as controlling high blood pressure or managing diabetes which can cause stroke and then epilepsy, avoiding alcohol and drugs like tramadol, marijuana, seeking treatment for infections of the brain like cerebral malaria and meningitis especially when they occur in children; and practicing good prenatal care to reduce the risk of birth defects or brain damage in infants. Also, giving birth in a healthcare facility with a skilled birth attendant can help reduce the risk of birth asphyxia (brain injury to the baby’s brain caused by decreased oxygen flow to the brain such as during complicated or prolonged labour), which is a known risk factor for epilepsy. Additionally, taking precautions to prevent febrile seizures in young children can also reduce the risk of developing epilepsy

Can epilepsy be cured?

No, epilepsy does not have a known cure. Seizures in epilepsy can be controlled in about 70% of cases with medication, but this does not cure the underlying condition. Epilepsy can be managed, but it cannot be cured. There are ongoing research and advancements in epilepsy treatment, but as of now, there is no definitive cure for epilepsy. However, many people with epilepsy are able to live full and productive lives with proper medication and management of their condition. They can stop having seizures for extended periods of time and lead normal lives with appropriate treatment. The secret is to start medical treatment early, and to consistently take prescribed medications as prescribed. 

Are families with many cases of epilepsy under a generational curse?

No. Genetic abnormalities or inherited factors can increase the risk of developing epilepsy within families, but this is not the same as a generational curse. Parents who have genetic abnormalities that can induce abnormal electrical activity in the brain and cause epilepsy may pass on those genetic factors to their children, but this is a biological process and not a curse. Additionally, in some areas of Africa, certain parasitic infections like neurocysticercosis (infection of the brain caused by a parasite) and onchocerca volvulus (the parasite that causes river blindness) have been shown to cause epilepsy. Families that are residing in communities where these infections are common and have been exposed to these parasites can have many cases of epilepsy, but this is due to parasitic infections and not a generational curse. The belief that families with many cases of epilepsy are under a generational curse is a cultural misconception.

Is epilepsy a contagious disease?

No, epilepsy is not a contagious disease. You cannot get epilepsy by being in close proximity to someone with epilepsy or by touching them. Epilepsy is a brain disorder; the only way you can get epilepsy from another person is to exchange your brain with theirs, which is not medically possible. If epilepsy was transmitted through body contact, we would see it spreading widely in the population, and all the doctors and researchers who work with these patients everyday would be affected.