Action for Epilepsy in Ethiopia

This fundraiser is organized by CAREEPILEPSY.

Over half a million Ethiopians with epilepsy do not have access to treatment. This is due to the inability to seek treatment as a result of a lack of knowledge about epilepsy, stigma, and discrimination, as well as a lack of access to epilepsy care, consistent medication supply and diagnostics.

Background:

Epilepsy is one of the most common neurological diseases in the world and affects 50 million people worldwide. According to the World Health Organization, 80% of people with epilepsy live in low-and middle-income countries, and 75% do not have access to treatment. However, with appropriate treatment, up to 70% of people living with epilepsy could become seizure free

Scope of the problem:

In Ethiopia, there are roughly 761,732 people with epilepsy, though the true burden of epilepsy is not known due to a lack of country-wide research. It is estimated 95% do not have access to basic epilepsy care and medications. Epilepsy associated deaths account for 1-3% of total deaths, 2x the rate of people without epilepsy. The knowledge of the community about epilepsy is poor, and their attitudes are negative.

CareEpilepsy Ethiopia:

CareEpilepsy Ethiopia is the only charity exclusively dedicated to serving and empowering people living with epilepsy. CareEpilepsy is a UK based organization that aims to change epilepsy care in Ethiopia by addressing stigma and increasing access to diagnostic evaluation and therapy. CareEpilepsy works with its global partners, such as the International Bureau of Epilepsy (IBE) and the ROW Foundation, as well as neurologists within the Ethiopian Neurologists Association as well as epilepsy specialists in the USA.

Since its conception, CareEpilepsy has cared for over 3,500 people with epilepsy. In addition, it has provided epilepsy education and seizure first aid training for over 70,000 people in the community. Due to our ongoing efforts to address stigma and increased recognition of epilepsy as a disease, the number of people seeking care has increased exponentially. In turn, the capacity of the organization to provide care has been limited.

Currently, the organization uses money raised through fundraising to continue offering free epilepsy clinic, advice and support, EEG and MRI diagnostics and obtain access to antiseizure medication.

How you can help:

CareEpilepsy Ethiopia continues to be a significant source of epilepsy information and care in Ethiopia. Currently, the organization uses money raised through fundraising to continue offering free epilepsy clinic, psychosocial services, vocational training, diagnostics and access to antiseizure medication.

We are raising funds to:

1. Purchase anti-seizure medications for 800 ;

2. Provide epilepsy clinical care for 1500;

3. Provide EEG diagnostics 350;

4. Offer counselling and education to manage epilepsy 800;

and ensure a healthy future with no or reduced seizures and increased public awareness and understanding of epilepsy.

See examples of our work below.

Clinical Care

Our outpatient service is run by a health officer, a nurse and neurologists and provides care for children and adults with epilepsy. We also offer free EEG testing.

Medication:

We have provided access to antiseizure medications such as Phenobarbital, Phenytoin, Carbamazepine, Sodium valproate, Lamotrigine and Keppra for over 600 patients.

In addition, we partner with the ROW Foundation to increase access to safe antiseizure seizure medication.

Advocacy and addressing stigma:

Public Education:-

We provide public education at schools, workplaces and health centers to dispel myths about epilepsy and teach seizure first aid.

Epilepsy Campaigns:-

Epilepsy awareness is an important social movement to improve understanding of epilepsy, reduce the stigma around epilepsy, and increase access to necessary help for those who need it. This is why we celebrate International Epilepsy Day (every year on the second Monday of February) and run the Ethiopian National Epilepsy Week campaign yearly. The week-long program always includes epilepsy training, media interviews, epilepsy training, and a fun-filled community walk.

Psychosocial support:

We provide group therapy, patients support group meetings, and vocational training to promote wellbeing, social bonding and empower people with epilepsy be a part of society and generate income.

Epilepsy Trainings:

In order to provide sustainable and improved epilepsy care beyond CareEpilepsy, we are involved in epilepsy training at all levels-nurses, health officers, non-neurology physicians and neurologists.