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Epilepsy Blog Relay: The story of the Mahenge Epilepsy Clinic

This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018.  Follow along!

Mahenge Epilepsy Clinic

It started in the late 1950’s when Dr. Louise Jilek-Aall discovered an unusually high number of outcasts from the Wapogoro tribe in the Mahenge Mountains, Tanzania. These outcasts suffered from Kifafa, Swahili for epilepsy. The people with kifafa were feared and shunned, as the tribe believed evil spirits caused convulsions. It was noted that even many times their own families wouldn’t assist them during seizures out of fear that they too would become possessed. Because of this, epilepsy patients also suffered from physical wounds such as, fire burns, scrapes, head injuries, bruising, and in some cases death from downing or prolonged exposure to fire. There was no access to medical treatment and no knowledge of the disorder, so the patients lead miserable, lonely lives in fear of their next seizure.

Dr. Louise Jilek-Aall founded the “Mahenge Epilepsy Clinic” in 1960 after bearing witness to this suffering. Changing the lives for hundreds suffering from epilepsy and enlightening the community on the disorder. In the first two years, 200 patients were treated with AEDs (antiepileptic drugs). Eventually she left the clinic in care of Catholic missionary and local volunteers, continuing to send the AEDs from abroad. She returned in 1990 to a clinic that was treating 900 patients! The majority of these patients were living with their families, participating in society, and leading close to normal lives.  Today, the clinic receives AEDs from the government and is still treating those with epilepsy. What an amazing difference one woman can make.

Click here to learn more about Dr. Louise Jilek-Aall and the Mahenge Epilepsy Clinic.

 


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Maureen Knorr
Follow Maureen Knorr:
I’m Maureen, and I have epilepsy. You’re probably reading this because either you have epilepsy, or you love someone that has epilepsy. Whatever sparked your curiosity, I am happy to be sharing my experiences with you. From having seizures in foreign countries to begging pharmacists that don’t speak English for medication, I can definitely say that it's been an interesting journey. Hopefully reading about my ups and downs, and my everyday and not so everyday adventures will inspire you too! Welcome to my life of living well with epilepsy!