Epilepsy afflicts more than 10 million Africans. Only 10-25% receive treatment.
African Epilepsy Congress
This past August the 4th African Epilepsy Congress was held in Entebbe, Uganda. The meeting, organized by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), welcomed clinicians, researchers and advocates from across the continent who aim to improve and expand epilepsy care. Participants addressed clinical management issues specific to Africa and discussed the vast challenges to narrowing the epilepsy treatment gap and eliminating the stigma, shame and abuse that impedes care.
This meeting came on the heels of a newly released World Health Organization publication titled “Epilepsy: A Public Health Imperative”. Its key finding: “50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally. Nearly 80% of people with epilepsy live in low- and middle-income countries. It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated”.
During the conference, many advocates and patients powerfully described the physical abuse, isolation, shame and denial of educational, social and employment opportunities that can result from epilepsy, which in certain instances is even believed to be contagious. They noted that epilepsy’s social stigma continues to be driven in part by a pervasive belief in witchcraft, with the disease often seen as a curse or retribution on a family. Mainly, epilepsy is viewed as a mental health problem, with traditional healers as the first line of care deploying treatments that can be both dehumanizing and unsafe.
Meeting participants railed against the injustice in epilepsy care, noting that affordable medication could immediately and dramatically improve the lives of the millions not currently receiving treatment. African governments were urged to further integrate epilepsy into existing health care systems. Representatives from Kenya, Zambia, South Africa, Eswatini, Mauritius and Mozambique gathered to discuss the BAND-funded project aimed at making epilepsy a national priority in their nations. sharing challenges and successes. In a letter read to all conference participants, His Royal Highness Prince Bandzile of Eswatini said:
“This is a time to unite and fight epilepsy, the silent killer. I call upon all Kings and Presidents of Africa, First Ladies, Princes, Princesses, traditional authorities and local governments to formulate an alliance to fight epilepsy.”
Media reporting on biodiversity loss often focuses on high-profile animals like elephants, rhinos and tigers. Less well known are the dramatic declines facing a range of other species, many of which play critical ecological roles and have profound importance for human economies, cultures and livelihoods. BAND funded National Geographic to report on some of these stories — including this award-winning piece on the illegal trade in the giant freshwater fish of the Mekong — through Wildlife Watch, its platform dedicated to covering wildlife exploitation.
Prior to European settlement, the landscape of the Southeastern United States was a mosaic of many habitat types, including significant and varied grasslands. These grasslands and the rich biodiversity they contain have been greatly diminished due to development, loss of large herbivores and fire suppression. A new article on Yale Environment 360 describes how a BAND Foundation grantee, the Southeastern Grasslands Initiative (SGI), is working to reverse this trend. Grasslands are one of the world’s most threatened biomes despite their critical importance for biodiversity, carbon sequestration and rural and pastoral communities. In addition to its support of SGI, BAND funds grassland conservation in Kenya, Tanzania and Mongolia.
It has long been understood that seizures can occur in people with Alzheimer’s, and this has been considered a potential factor in the progression of Alzheimer’s dementia. However, the links between Alzheimer’s disease and epilepsy are poorly understood. With the BAND Foundation’s support, the Alzheimer’s Association convened scientific and clinical leaders from the epilepsy and Alzheimer’s fields to review current understanding of the biological mechanisms underpinning the respective diseases. The goal of this two-day meeting, held in September 2017, was to plan for future research and catalyze collaborations needed to identify novel diagnostic and treatment strategies. Results of the meeting can be found here.
Sudden Unexpected Death in Epilepsy (SUDEP) is the leading cause of epilepsy related mortality, yet remains poorly understood and hidden in the shadows. Despite its significance, health care providers are reluctant to discuss SUDEP and offer strategies that could mitigate this worst outcome of epilepsy. A new article in the American Academy of Pediatrics Journal, Pediatrics, describes elements of a BAND-funded effort to increase understanding and awareness of SUDEP among health care providers and patients at Children’s National Medical Center and the University of Virginia Health System. It underscores the importance of families and providers working in partnership to promote education and SUDEP prevention strategies.
The BAND Foundation supports the Mara Lion Project (MLP), which seeks to answer scientific questions essential to the conservation of lions in Kenya’s Maasai Mara ecosystem and to inform lion conservation more broadly. A fundamental challenge has been to develop an accurate way of measuring the density of lions across the landscape. This information is essential to tracking conservation success, guiding conservation investments and targeting efforts aimed at mitigating human/lion conflict — the latter being a major source of lion decline across the continent. MLP’s project director Nic Elliott has authored a new paper, just accepted for publication in the journal Conservation Biology, that reports on a new methodology for providing accurate assessments of lion numbers. This method, which estimates a total Mara population of 420 lions at a density of 16.85 animals per 100km2, will provide vital information on lion population trends in the years to come.