Wednesday, April 17, 2024

Epilepsy activist Kabemba Mwale shares her story

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Epilespy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.

Kabemba Mwale is an epilepsy activist , she shares her story below;

“My name is Kabemba Mwale born 29th December 1982. I am the last born in a family of 4 children. I had my 1st seizure in 1991 on the 29th August. After my second seizure on Christmas Eve ,that same year, my parents then advised the medical staff to find out why I was having more seizures. This was at the age of 9 and I was schooling at LICEF. I then started going for hospital reviews which in a way affected my school attendance as I would be absent on those review days. As I grew I continued experiencing seizures though the advantage I had was that I could tell as I would have an aura before a convulsion. I continued to take my medication as prescribed even though I would fit at times. As I approached my late teen years I went into a depression unknowingly. The depression was catalyzed by the nature of an antiepileptic drug as it is a suppressant and helps you to rest.

Some family members were not comfortable to have a relative with epilepsy. Some of my grannies also took me to witch doctors as they believed epilepsy was witchcraft. But because of my loving parents who believed in God I was on conventional medication immediately I was diagnosed epileptic. Fortunately in my case despite not knowing the cause , epilepsy has not affected me mentally or physically. In May 2016 I decided to open up and share my story with the public. I did this by creating a Facebook page called EPILEPSY FORUM WITH KABEMBA MWALE. This page received overwhelming response that inspired me to encourage others. I therefore decided to take an extra step to reach out through awareness advocacy counseling and epilepsy management as I realised that they are so many people who have the condition but are not aware that there is treatment. On 25 October of 2016 the KABEMBA MWALE EPILEPSY FOUNDATION was officially registered. My plight to the media is that they are able to provide as much coverage to bring out this silent cause. I am glad to mention that on the 14 January 2017 I will clock a good 4 years without an attack. This is motivation for others and I am saying that it is possible to lead a great and positive life even with epilepsy.”

KAPA187: What signs or symptoms does one experience before they have a seizure?

KABEMBA MWALE: Not everyone has a sign or symptom. But in my case I do, I sometimes feel lightheaded, heart palpitations, nausea, strange scents, cravings, dizziness are just a few of them.

KAPA187: If a friend or loved one is having a seizure what should you do?

KABEMBA MWALE:

  1. Stay with the person
  2. Time the seizure
  3. Protect from injury
  4. Loosen anything tight around the neck
  5. DO NOT restrain the person
  6. DO NOT put anything in the mouth
  7. Roll the person on his/her side as the seizure subsides
  8. After the seizure talk to the person reassuringly

KAPA187: What are some of the misconceptions about epilepsy?

KABEMBA MWALE: some misconceptions are:

  1. 1. Epilepsy is contagious
  2. Epilepsy is demonic
  3. When an individual living with epilepsy burns they can never be cured.
  4. If anyone else breathes in bad air or touches froth from an epileptic patient they too will have it.
  5. Epilepsy is a mental case or person considered mad.

…all of which are not true but myths.

KAPA187: Is medication for epilepsy readily available?

KABEMBA MWALE:  Medication for treatment, drugs, is normally readily available but currently there is a shortage due to expired drugs countrywide. So only a few elite people are able to afford what the few private pharmacies are able to stock, that’s if they also have it.

KAPA187:  What are some of the DO’s and DONT’s of epilepsy ?

KABEMBA MWALE: Eating healthy, exercise to keep fit and follow doctors orders.

Don’t’s; Drinking alcohol and smoking. Avoid Stress and anxiety. Don’t miss your medication at prescribed times.

KAPA187: Tell us about the challenges faced by someone living with epilepsy?

KABEMBA MWALE: Challenges faced are firstly self-denial of the condition. Denial by the family, which leads to lack of emotional support and stigma. A lot of myths in the community i.e. school work and home. Certain activities that you are no longer allowed to take part in, example is swimming. Taking control drugs is a challenge in the beginning because it’s an everyday thing. Not knowing when you will have a seizure. Major challenge is your control drugs managing your seizures otherwise change of drugs is necessitated until a drug that is able to work is found. If the cost of your drugs is high and only available in private pharmacies as the government can’t afford to stock the over 200 types of control drugs. I personally know a young lady whose control drugs cost about K 1000 per week.

KAPA187: Tell us more about the Kabemba Mwale Epilepsy Foundation.

KABEMBA MWALE: The Kabemba Mwale Epilepsy Foundation has been a dream that I have had for many years to share my story and most of all talk about the SILENT CAUSE. After a few reads on epilepsy and encouragement from my mentor who is my dad Mr. Nichols Sambwa Mwale and Mwansa Bwale , I finally decided to make my dream come true.

My objectives are to spread awareness, be the voice for the voiceless, Carry out counseling through support groups, Epilepsy Management and hopefully in the near future carry out a census for persons living with epilepsy.

KAPA187: Any words of encouragement for someone living with epilepsy?

KABEMBA MWALEOf course, I would like to encourage people not to concentrate on the myths but should focus by taking the medication at prescribed times, attend all reviews for a better follow up, ask questions and always be positive about your condition. I always say IT IS POSSIBLE TO LEAD A GREAT LIFE.

  I was celebrated 4 years of seizure freedom on the 14th of January. If can do it why not you.

“On 13th January at Kabwe General hospital as I celebrated my 4 years seizure freedom which I actually clocked on 14th which is the anniversary. I requested Agness to cut the cake but had to help her do so as she is physically challenged due to epilepsy. In the tee shirt is my cousin Chanda Nguni and I would like to thank Chileshe Ntema for a wonderful cake that was donated to the foundation.”

Contact Kabemba Mwale on her Facebook page Epilepsy Forum with Kabemba Mwale

 

 

BY KAPA187

 

 

22 COMMENTS

  1. I have a niece who is going through this condition. Can you please give your contact details. I want to bring her for counselling.

  2. My brother died of the same. He had a seizure and he was home alone and he got suffocated because he was lying face down when it happened. You will save many with your new platform. God bless you

  3. This is good and brace for the young lady. You have talked about what most people surfer in silence. Well done for shining a light on this issues.

    When I have this issue, some myths where brought about, but some medication was given too. At the time, my family didn’t go the conventional way, instead I was given marijuana as a vegetable supplement. It worked in my case though I haven’t researched to prove it scientifically.

    Congratulations on making it 4 years. My last was 27 years ago.

    Wishing the best and that your foundation will impact many. Share a link where people can reach you and try to get an expert on the subject

  4. Comment:kabemba your bravery is stunning..
    my eyes were filled with tears as I read your story..
    God bless you as you help in saving my lives

  5. Good creative thought, Kaemba Foundation bound to help lots of people with similar condition in Zambia.
    We are ready to facilitate help from UK if correctly specified with other Epilepsy organisations.
    Will keep watch for Kaemba Epilepsy Foundation contact details.

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