In a world where little attention goes towards preventive, promotive and curative investments on epilepsy, valent Adhiambo a young woman from Migori has risen against all odds to challenge inequities, myths and misconception about persons with epilepsy. Notwithstanding the bottlenecks experienced as a front liner in fight for protection on rights of young women with epilepsy, Valent relentlessly continues to create safe space and amplifies voices of those with epilepsy. Her experience has taught many not to compromise on their needs, and to dream for an inclusive future
“I grew up to be a very jovial and healthy girl until the age of one and half years when something strange started happening to me. My mum tried her best to seek medical attention from different health facilities but it was all in vain. She received different advice from different people; some advised her to go to the local herbalist/ witchdoctors who were referred to as `prayer persons/men` but my mum trusted so much in her God and kept on praying for the me and to seek medical attention.” Valent says
She sought medical attention in which her diagnosis indicated that she was developing a brain condition as a result of the prolonged labor her mother experienced during birth. At the time this was discovered, valent was experiencing regular convulsions but this didn’t hinder her from starting her academic years and being social. She says “I was a very social and talkative girl who could engage everyone I came across in very mature and interesting conversations. When my mum gave birth to the other three children, they were all boys and were just okay, not experiencing the same condition that me as a little girl was going through.”
Valent intimates, that her pillar of strength who happens to be her mother, did not at one point give up on her, “My mum didn’t give up in her only daughter but instead became even stronger and tried to give me the best.When i was in class three, the condition became severe and my mum was worried, she was advised by a colleague to take me to a herbalist somewhere in Migori. The herbalist gave her some herbs to boil and gave me to drink; for seven years since then I never had any epileptic seizures.”
Teenage Years’ Challenges.
Valent narrates that her second year in high school wasn’t smooth sailing as the past years. She started having convulsions and later was taken back to the hospital in which she was confirmed to be epileptic.
“The neurologist prescribed some drugs to me and i went back to school, although this didn’t stop the condition completely, I was still experiencing regular seizures that could come once after three months. At school, my teachers could not understand me at times especially during/towards/ after exams as I was experiencing more seizures during these times and this made them say that I `feared` exams and this made me very stressed and the more stress I was, the more seizures I experienced. This went on until i completed my high school through to college until I completed.”
Valent further narrates that it took her a long time to accept her condition, she could not participate in some games/activities simply because her peers and teachers were afraid, she would get seizures and others would be blamed for it. “Years later” she says, “I couldn’t even get to any relationship with a man and at one-point i decided not to disclose this to any man approaching me for a relationship.”
Her passion to start a Community Based Organization (CBO) was largely due to the disappointments she experienced in life as well as the empathy she had for other persons with epilepsy. “Whenever I went for an interview and the interviewer got to know about my condition, the interviewer would find an excuse not to give me the job. I have lost many jobs because any time people were being laid off, I would be the first and the reason was because of my health condition.”
‘GENO’ Community Based Organization
At GENO which in Luo dialect means hope, valent uses her knowledge on her condition to create awareness on epilepsy and sensitize community members. The organization also supports, young women through scholarships to ensure they continue with their education despite their condition “I have also started two monthly epilepsy clinics and as at now, persons with epilepsy within my county and other neighboring counties can access the monthly epilepsy clinics easily.”
The engagements within the organization has boosted vallents self esteem as shown by the confidence she exudes whilst with peers, mentors and partners. As a board member, of Kenya Female Advisory Organization, she well represents the interest of Persons with disabilities, particularly those with epilepsy.
“I recall when I completed my high school an old man from a place called Loliondo in Tanzania came into picture. This man was believed to have medication that could heal even HIV positive people. Many people including the rich and learned people in society were caught up in this wave and unfortunately most of them neglected their drugs and died.” Valent reminisces
“I don’t really believe in the traditional medicine since I have seen their consequences even from my clients. Some of them are not genuine but pretend to be religious leaders who have powers to finish this condition completely with a condition that you will give them anything they want and do whatever they say. Some of these instructions are so scary and do not even make sense at all! Imagine someone telling you to go and jump over someone else`s urine so that the condition can be transferred from you to that other person! This condition comes with so many myths and misconceptions that mainly is brought by these alternative medications.”
Myths and Misconceptions
The birth of GENO CBO is largely attributed to the myths and misconceptions on epilepsy and for valent, the space she has created has helped to counter some of the negative narratives on the condition. She highly advocates for access to information on epilepsy and offers advisory services to community members on how to manage the condition. She further exclaims, “Many people have different perceptions concerning epilepsy. Some believe it`s as a result of witchcraft, others think its as a result of something done wrong by the parents and that a sacrifice must be offered! While others especially back in my community believe that it’s something transferred from one individual to another.”
Valent reveals that such beliefs lead to stigmatization causing high number of stress, depression and even deaths since so many people with epilepsy and their parents/caregivers fear disclosing the condition let alone seeking medical attention.
“So many people do not know that epilepsy is manageable and treatable, some do not also know that epilepsy is treated as one of the disabilities in Kenya and in the whole world because no one has told them and this has led to lack of statistics on the number of people with epilepsy That’s why, I decided to start the CBO so as to give people the right information and advise them on how to manage this condition.” Valent ends.
`SHOUT OUT EPILEPSY`