I recently had the opportunity to speak to Farrah Mateen, MD, PhD, Massachusetts General Hospital/Harvard Medical School, the principal investigator on The Guinea Epilepsy Project. This is the latest in a series of global health projects Dr. Mateen has led, including The Bhutan Epilepsy Project. She took a moment to share some background on this important project.
Living Well With Epilepsy: Dr. Mateen would you give us an overview of the Guinea Epilepsy Project?
Farrah Mateen, MD, PhD: Our project – the Guinea Epilepsy Project – is a multi-country collaborative effort, taking place at Ignace Deen Hospital in Conakry. The Ignace Deen Hospital is a large academic public assistance hospital and one of two teaching hospitals of the University of Conakry. Led by Farrah Mateen, MD, PhD, Massachusetts General Hospital/Harvard Medical School, and Cisse Abass Fode, MD, Ignace Deen Hospital/University of Conakry, with additional leadership by Sakadi Foksouna, MD, Chad, and Nana Rahamatou Tassiou, MD, Niger, the Guinea Epilepsy Project has now conducted >300 patient visits free of charge for people with epilepsy.
LWWE: Why did you feel Guinea would be the best fit for your project?
FM: The Republic of Guinea is a beautiful West African country with a population of 12 million. The capital city, Conakry, has a population of 1.7 million, and is the main urban center and port city for the country. The people of Guinea were recently affected by the Ebola Virus Disease outbreak, leading to significant stress on their already limited health care resources. There are few neurologists in Guinea. The country is warm, welcoming, and vibrant. It is a young and growing population with many neurological needs.
LWWE: What do you hope to accomplish with the Guinea Epilepsy Project?
FM: The Guinea Epilepsy Project aims to provide free antiepileptic medications and test a low-cost, smartphone-based EEG to aid in epilepsy diagnosis and treatment decisions in under-served patient groups. We will also determine the impact of epilepsy and quantify the prevalence of risk factors, seizure-related injuries, and traditional medicine use in the goal to de-stigmatize epilepsy and encourage therapeutic options in epilepsy care.
LWWE: What successes have you seen come out of the project?
FM: The research team saw >300 patients, with a focus on children, in 2017, providing epilepsy consultations, making medication recommendations, and supplying free medications and folic acid. Radio Television Guinea interviewed the team about the project, care being provided, and causes of epilepsy on several occasions.
Many patients had seizure-related injuries including severe burns and most had experienced >100 seizures in their lifetime. Very few patients had received an EEG, CT, or MRI of their brain as part of their care. Our work aims to modernize epilepsy care to improve diagnosis and treatment for epilepsy patients in Guinea.
LWWE: What are your next steps with the Guinea Epilepsy Project?
FM: There is much more work to do. We thank the Charles Hood Foundation in New England for their major support of this work to date. We are also actively partnering with new groups to ensure that more people in Guinea can live well with epilepsy!
Thank you so much Dr. Mateen for taking a moment to bring us up to speed on your latest project. To connect with Dr. Mateen to learn more about The Guinea Epilepsy Project, contact the MGH Global Neurology Research Group.
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Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.
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