LIVING WITH EPILEPSY: THE GOOD, THE BAD, THE UGLY

by Lynn Otieno

Howdy? It’s been quite a while since we shared stories on this forum, thanks to covid and all the drama it came with. Nonetheless, we’re kicking this off with something interesting, like we’ve never done before. An interview.

Today’s article is not like any other that you’ve read on this platform. Enjoy…
Vallent Rachel is a woman living with epilepsy and the CEO of BEAFK, an organization that champions for the rights of people living with epilepsy and creates awareness on epilepsy. I had a sit down with her and this is what she had to say.
Tell us about yourself…
Answer :My name is Vallent Rachel Adhiambo, I am the CEO of Banard Epilepsy Awareness Foundation, I also live with epilepsy😊.

Most people, I included, have heard the term epilepsy, but a good number do not actually understand what it is or how it happens. What is epilepsy?

Answer: Simply put, Epilepsy is a medical condition of the brain whereby someone experiences seizures /convulsions and then blacks out.

Briefly share with us what triggers these seizures
Answer : Triggers differ from one person to another but the most common ones are:

  1. Stress, anything straigning the brain, be it too much excitement or sadness can trigger.
  2. Some infections like malaria, TB ,HIV /AIDS.
  3. Alcohol and drugs
  4. Bright disco/tv lights.
  5. Lack of enough sleep
  6. Missing meals
  7. Missed/skipped medication.
  8. Menstruation in ladies
    And many more😊

Tell us about BEAFK, what it does, when it was founded, and the inspiration behind it.
Answer : BEAFK was founded in April 2020, I met with my partner (Banard Mbuya) who came up with the idea and we agreed to come together and do this.
The main reason why we started the foundation is because people are ignorant about epilepsy! People living with epilepsy are not being given the right information and even their caretakers don’t know much. Since both of us are living with epilepsy, we know what it is, we have undergone so much pain and frustration because of this, I lost my job in April because of this, my director lost his job because of this, many people including myself back then do not know that people living with epilepsy have their rights too and should be treated just like people living with disabilities! The society as well does not know what to do when and how when a person living with epilepsy has an epileptic seizure and this has brought alot of myths and misconceptions and that’s why we decided to create awareness to the society, people living with epilepsy and the caretakers about epilepsy.

That’s such a noble and passion driven initiative. It’s true that the society is oblivious of the issues of people living with epilepsy. I say so because it’s not given enough airtime. I applaud you and Bernard for taking the bold step in fighting for the rights of people living with epilepsy and pushing for their voices to be heard. You’re doing a wonderful
job! Onto more specific details, Share with us your story, when were you diagnosed with epilepsy and how has it been for you?

Answer : I was diagnosed with epilepsy when I was one and half years old and I have been living with it for 30 years. It’s been challenging most of the time because my family,friends and I get stressed up whenever I get an epileptic seizure, before I reached full acceptance, it used to come with so much stigma and this led to even more frequent seizures.
I have also lost friends and jobs due to this.

That’s quite a handful. How have you been able to cope ?
Answer : It hasn’t been a walk in the park, but I got a very loving and understanding family and friends! This has helped me beat the stigma and now, I can even talk about my condition anywhere without any fear of being judged or stigmatization. And it’s because of
their love and support.

It’s great to know that you have such a wonderful support system, having people who look out for you is everything. In the spirit of paying more attention to the feelings and the rights of people living with epilepsy, how should I go about helping someone who say is having an epileptic seizure, to ensure that they don’t get harmed in the process? As you know, there are so many misconceptions and false information and myths about what kind of first aid should be administered to a person having an epileptic seizure. What should we do?
Answer : It’s simple really, just lay them on their left side, loosen their cloths especially if they are wearing a tie, then make sure they get free circulation of air, for instance there shouldn’t be people surrounding them consequently barring them from receiving enough oxygen. Then just give them time. DO NOT put anything in their mouth as people do in a bid to prevent them from biting their tongue: things like clothes and spoons etc. It could do more harm than good.

Is epilepsy treatable?
Answer : It’s manageable but it’s recommended that immediately you suspect that you may have it or a baby may have it, go for checkup and have a proper diagnosis done. It can be treatable if the patient is consistent with their medication.

What projects are you currently running at BEAFK…
Answer: We are just starting out, and most of the work we are doing right now revolves around sensitization, we are reaching out to people living with epilepsy, to families with kids living with epilepsy and supporting such kids who may be coming from poor families and who may not be able to afford basic needs. To fund these activities we print and sell T shirts, finance from our pockets, rely on donations from family, friends and well wishers. Actually, we are currently running a fund drive here https://changa.page.link/2ieyZ to help us fuel the activities of the organization. We also have a PayBill: 891300 Account: 42221 for the same.
Any form of support will be appreciated.

There’s one last thing I know my readers will really be interested in, epilepsy and dating. What is your experience?

Answer: It’s quite tricky! Most people including men fear dating women living with epilepsy. They may just love them but once they hear that, they retract because of the misconceptions flying around about epilepsy , some fear that if someone is living with epilepsy she can’t be pregnant and give birth and many more😂😂😂

This has been a pretty informative and eye opening session for me. Keep up the wonderful job that you are doing and thanks for your time and for sharing your journey with us.
Answer : Thanks for having me.

If you have any questions or concerns about epilepsy and related issues, please feel free to contact Vallent on her cell phone @ +254710825318

shoutoutepilepsy

You may also like

Leave a Comment