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Epilepsy in Kenyan Villages and why community matters

Rich’s Story

How important the November month is to my life, as I celebrate the Epilepsy Awareness Month as well as my birthday.

The importance of family

I have a family with two young girls and I am often thinking of the best way to ensure they’re not scared when I have seizures. The 3 year old always runs away calling for mummy, who immediately comes to my rescue. That’s an example of how important a family (meaning just the people we are close to) can be before episodes turn wild, creating even more injuries. Immediately after I had a family, levels of my seizures reduced as they’re always ready to remind me what to do and what not to do so I can stay safe.

Managing stress

You may know there are various types of epilepsy with different anti-epileptic drugs to control them, but I realized we can create our own tactics based on our lifestyles to help manage the condition. For instance, I decided not to feed my brain with any negative stuff however important it was to someone else, as it is automatic stress level raiser. This is because my health is a priority. The moment I refer to it as ‘junk’ or ‘not important’ to my brain, I will have reduced the number of seizures in a day. Some will refer to it as arrogance, but the few who are ready to learn more about Epilepsy will always pat your back & say “all is well”.

Epilepsy in Kenyan Villages

I have voluntarily been mobilizing persons living with epilepsy in my local Kenyan Villages for 3 years. As much as we try informing them on the need to visit hospitals for MRI Scans to determine the nature of their condition, unfortunately members of the community are held up with traditional myths with regards to epilepsy. I personally take the initiative to visit these community members’ households to share with them my story, which is transforming them slowly.

Transforming together

The community has agreed to form a Self Help Group where they meet once a month share their experiences and practice table banking to economically empower them.  The group has various goals including the following:

  • Save towards their Medical Assessment
  • Ensure they’ve basic financial skills
  • Create a system aimed at recording their medical records for easy accessibility
  • Create a network of organizations or volunteers for any form of partnerships

Short term goals

The above can only happen through commitment of the members and care givers, since we base our unity on sharing experiences. We have decided to save towards a Mountain Bike that will increase our mobility to every household as it is more secure than other means of transportation. Since they’re in interior villages within the community a bicycle can easily access these areas.

Any form of organization aimed toward sensitizing persons living with epilepsy is vital as it changes the mindset myths on epilepsy and aim towards empowering them to fit in the society and live a normal life. To learn more about how you can support this group contact Rich Tsuma directly on Twitter at @RichardTsuma or via email at richtsuma@gmail.com.

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