Bringing the world together
Amazing people come together to do amazing things. I have witnessed this through our Global Epilepsy initiative at Lurie Children's and CURE Uganda.
The goal was to elevate the offerings of epilepsy care in the region with knowledge and skill transfer in epilepsy surgery, which can produce a surgical cure for seizures in well-selected patients especially with lesional epilepsy. My decade-long relationship with colleagues in subSaharan Africa has only increased my respect and confidence in the surgical skill and dedication of pediatric neurosurgeons like Dr. Emmanuel Wegoye and Dr. Humphrey Okechi. With their service to babies born with congenital neurological problems, these children are now living longer, and facing quality of life issues in chronic diseases such as epilepsy and spasticity.
There are an estimated 1000 pediatric patients in the Mbale area who are taking antiseizure medications, who have never received a diagnostic imaging test nor an electroencephalogram (EEG). Without these, we cannot tell if they may benefit from, or be cured with epilepsy surgery.
Where do we start? The Lurie Children's EEG team has a successful, established Neurodiagnostic Trechnology training program, fully meeting ABRET accreditation standards. There is donated EEG equipment at CURE. There are no EEG technicians or pediatric neurologists in that part of Uganda. There are many patients in need.abret.org/index.php
With these realities in mind, the Lurie Children's Neurodiagnostic technology training program was redesigned to be 24 weeks long, with the goal of producing EEGs on patients in 6 weeks., then further refining skills and troubleshooting over time. The training material and online education portals were donated by the Global Initiative of the Neurodiagnostic Society (ASET), while the twice-a-week hands-on training (by Zoom!) has been conducted by the Lurie Children's team with 10 medical officers and neurosurgeons in Mbale, Uganda. Read more here.
Identifying the lateralize, lesional cases is one of the first practical goals. We engage in multidisciplinary epilepsy case conference online and work toward safe, effective pediatric epilepsy surgery care in Uganda and the region.
So proud of this initiative - the world is a small, engaged, wonderful place even in the pandemic. We are grateful for this opportunity help make a difference that will continue to grow in impact into the future.
Key facts from the WHO about Epilepsy:
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