Epilepsy Sparks

Epilepsy Education & Culture Change in Uganda


Epilepsy Education & Culture Change in Uganda

Nina Mago1, CEO & Founder of the Purple Bench Initiative – Uganda2 is an inspiring professional living with epilepsy as well as teaching locals about the condition.

Favourite food: Tender steak with a garden salad

Favourite artist: Rebecca Ferguson3

Location: Kampala, Uganda4

Favourite quote/saying:A life lived in fear is a life half lived.”5Baz Luhrmann6

Two years ago, I founded the Purple Bench. A project then, that would create awareness, consequently resulting in the social acceptance of Epilepsy as a treatable- non-contagious condition in society. In turn, this would empower caretakers and persons afflicted by the condition and create a foundation enabling the enjoyment of fundamental human rights and equal opportunities for one to live a dignified and highly impactful life. Today, the Purple Bench Initiative – Uganda; is an NGO (Non-Governmental Organisation)7 with the same strong values, compassion, and empathy as before.

It all began with my diagnosis years ago. By the age of 6, I had experienced tonic-clonic8 seizures and seeing a neurologist whilst in Russia is when I finally had the condition confirmed. For seven years, I was constantly monitored and although I was on medication, the seizures kept on. Some days were without seizures, while some were rough; where I had seizures simply minutes into the day. In fact on particular days when the atmosphere was circulated with chemicals, I was advised not to attend school.  I spent other days in the safety and comfort of my teacher’s arms, rocking back and forth, while she taught the rest of the class and occasionally felt for movement when I came around.  Epilepsy remained a chronic condition accepted and managed for me while in my Russian school.

From a Ugandan perspective, the story was different. At the age of 12, I battled with the ostracism and betrayal by a society, which I assumed I could associate and relate with. Waking up on a dusty floor, wounded and disorientated while children made a spectacle of me through the window. Not being able to run to someone older for safety and not waking up in the safety and comfort of my class teacher marked the beginning of a now very scary new world. A tough world and one I was not ready for at the time. It made me reclusive, resulting from a failure to cope.  I was “possessed 9, constantly bullied and always made fun of- always!  It was the beginning of the end.

Locally known as “Ensimbu 10, Epilepsy sends shock waves through communities at the mere mention of the word.  It tells a tale of loneliness, discrimination, and stigmatization. The secrecy associated with it keeps one shackled in fear and the terror of exposure will mute and drown you in misery. Society slowly saps your confidence and self-worth till all you know is nothing more than doubt. It is no wonder then that it’s a common misconception that a person with epilepsy can’t get much out of life.  A good education is hard to attain with vast myths and misconceptions. The prospect of marriage is very minimal and employer prejudice makes for high levels of unemployed individuals with Epilepsy. Stigmatization shrinks social circles and so the prospect of marriage dwindles.

With proper diagnosis and medication, family support and my own courage, I gained stability with the condition years later.

I managed to attain a BA Degree in Ethics and Development Studies11 and worked in the world of Rural Development. I acquired an even greater appreciation of people in general, especially those battling Epilepsy and the challenges they face dealing with community’s often hostile attitude towards the condition.  

I constantly searched for a figure to talk to and look up to - one that bared the same battle scars. Unfortunately, I couldn’t find one, leave alone one willing to share their experiences with me. The search went on in vain and left me empty. I needed someone to be a rock for me but people were as mute as I had become about the condition.

I took the decision to beat the fear of exposure and “came out of the shadows”. I now tell the story of Epilepsy in its entirety; a story that changes names, families, locations and continents and a story that I tell with conviction, confidence and pride to masses.  One where each word builds up to a phrase, a sentence and a paragraph that creates Awareness of Epilepsy. I became the person that I had desperately been searching for; one that school going children look up to and aspire to be and more.  The one that says Hi I’m Nina and I battle Epilepsy with a smile; because it’s not just about me, but more about the hundreds of people that I am a spokesperson for - up until they are confident enough to speak for themselves.

Through spreading awareness, I have met people from around the world that are doing a great job at spreading the word about Epilepsy but also coping with the condition and all that comes with it. They are strong, empathetic and caring individuals that continue to inspire me.

I, in turn, continue to foster change that will nurture the social acceptance of Epilepsy in communities; to empower those afflicted while creating a firm foundation that enables the enjoyment of fundamental human rights and equal opportunities for each to live a dignified and highly impactful life.


  Nina Mago

   CEO - Purple Bench, Uganda

   purplebenchug@gmail.com


       


Sources:

1.       LinkedIn: https://www.linkedin.com/in/nina-mago/

2.       Purple Bench Initiative: https://www.facebook.com/purplebenchug

3.       Rebecca Ferguson: https://www.rebeccaofficial.com/

4.       Wikipedia: https://en.wikipedia.org/wiki/Kampala

5.       Brainy Quote: https://www.brainyquote.com/quotes/baz_luhrmann_509227

6.       IMDb: https://www.imdb.com/name/nm0525303/

7.       Wikipedia: https://en.wikipedia.org/wiki/Non-governmental_organization

8.       Epilepsy Action: https://www.epilepsy.org.uk/info/seizures/tonic-clonic

9.       Global Health: https://globalhealth.ku.dk/news/news_2009-2011/epilepsy_and_social_stigma_in_uganda/

10.  Figshare: https://figshare.com/articles/_Local_terminology_used_in_Tanzania_and_Uganda_for_chronic_conditions_/1599649

11.    Uganda Martyrs University: http://www.umu.ac.ug/alumni/

Comment



Thank you for sharing it's really touching I have a sister with the same problem so you can kindly advise me Thank you

Nina, am proud so super proud of you. Not just for the confidence of coming out and sharing your story and struggle, but for taking the step to make change in our society. You are very right about the stigma around Epilepsy in our society . And it's sad for me to say that at some point in my life I was among those naive people. But because of education and people like you Nina , we are being educated and changing the future for the rest who are in those same struggles. Girl keep up this amazing work and am right behind supporting you. As your friend I want to see you live a long and healthy life and see your dreams come true and keep supporting you to reach bigger audiences because society needs this and we need to embrace everyone and help them through all . Thanks for the Blog and watching out for more. Keep rocking Girl #purplebench.

Thank you alot mrs Nina for Raising the Bar for Epilepsy Awareness in Uganda and world wide because Ignorance is not an excuse and you have motivated me alot already with this beautiful piece of writing and coming out so so openly.

Powerful story Nina. I'm so glad brothers and Sisters in Uganda get to have the Purple Bench! You are doing important work!

This is an awesome piece of writing. Nina, thank you for sharing your experiences which I believe will help many to come out of the shadows. You have our support in this mission.

Nina Thank you for sharing your experience of having epilepsy. I have epilepsy, due to a car accident when I was young. While I have to take medication to prevent any fits, I am very much aware of how fortunate I am, in how my attacks are so well controlled. It would be wonderful if one day there would be a medication that would control all kinds of epilepsy. The with good education about the condition people will learn that it's something not to be afraid of and that people with it can achieve so much.

Well, Nina, I hope that you don't mind me calling you Nina, that was a very interesting read about your experiences in life, it's always so nice to someone to come out, when they are buried so deep, and now to have such a great life, Always Believe, Be positive, Be Happy ???? Smile I have Tonic Clonic Seizures not very nice indeed completely agree with you, you are a great inspiration to so many people always be proud of who you are, Ambassador for Purpledayeveryday ???? England ????