My name’s Chantal Kanyabutembo SG of the EAA, and co-founder of Geco Rwanda, a middle-aged women victim of epilepsy(16 years) since the age of 11 up to 26 years! We do celebrate the stripes week to commemorate ourselves as warriors of our Families and global ambassadors! This disease affected my life when I started secondary school. Most of my friends may not understand why I have absences and try to refer me to a traditional doctor or pastors, but I was brilliant at school!
My Family were Christian and stand on Faith of our God Jesus Christ, my lovely parents played great love toward me and always tell me that God is able all the time! Dr Gasasira was a great expert local doctor who gave me Sabril known as vigabatrin as a first treatment but end of the day that prescription couldn’t help!
I moved to England where I received a proper Diagnostic as a partial complex clonic general seizure, then day by day took more training on self-management of my epilepsy! The more delay on your treatment the more time it takes for your AEDS drugs or your seizures to get fully controlled. It took me 8 years to meet the right specialist , I was asked by my chancellor at university to take all my courses online during my studies due to a fatal incident in Lecturer or in train or any public transportation, despite it I successfully completed my university with good Grades and started to work as an Account Administrator but taking more role on political social empowerment programs in My borough! The UK epilepsy society always informed us about our right based on drugs & patient care, civil right I learn more from them and I transferred my knowledge in Rwanda as a national advocate !
The good news: in 2008 I became free of my seizures under Gabapentin and sodium valproate then in 2010 I visited my country to see if many students are facing the same stigma as a cursed woman without inclusion finance or a child to be dismissed at A level, examine, and fail to get a pass that happen to me but unfortunately it still exists!
My courage brought me to a point where I founded Geco Rwanda with other members in western Province of Rwanda, I chose the Location because my grand Dad was a social worker in the area before 1994 genocide, he was killed in the genocide due to his ethnicity Tutsi, I was proud of his leadership inclusion and transparency at work, his passion played a role in my heart as a humble, resilient compassionate Agronomist!
Then I built a researcher volunteer team in identifying patients from hospitals to resident area, making sure those out of drugs will get a ratification through the government to reach at free universal health coverage, another fact I did disclose is malnutrition amongst patient which increased risk to sudden death due to social exclusion lack of employment, education despite taking their repeat prescription. I influenced the ministry of health to work with us and bought a stakeholder able to finance nutriment that reach at a good success in all 12 hospitals. Now all national patients are under free universal coverage. We thank the Rwanda social Security boards and MoH and his excellence President Paul Kagame for such free health coverage (depakine,leveritacetam,carmapezine,phenobarbitol,phenytoin) Geco cooperative group inclusion finance Farms/ agricultures cooperatives which play a role as a domestic macroeconomic program feeding 350 members and now, they have their grinder able to produce their own made in ground floors finish product!
We improved all C session in Maternity infant and hygiene and methods of delivery! We work on prevention merger by teaching mid wife the right way to prevent any incident on prenatal birth that play role and reduce case of incident at childbirth!
I end upon a success journey campaigning about awareness and promote the opening of the National Rwanda Bureau Epilepsy Society which will help all patients in the country to vote for a right health care practice and civil right legislation enhancing national forum, awareness, telemedicine, research etc. with other multinational partners!
My Final task is to fight for the UNCPRD Law to be introduced to all patients under anti-epileptic drugs, that’s why I join the EAA for Africa to have one unit voice and make a success change on ratification law which will take in consideration epilepsy as an invisible disability, and then 54 states may adopt it and promote social wellbeing for patients by getting exempt transport, taxes, free educations and remove stigma in patient environment, there telemedicine is very important because up now in Rwanda we managed to save many under age with different syndromes by giving them a right prescription from Dr Najib Kissani, a good doctor director of the neurology department in Mohamed 6 university Marrakesh! My last message is to encourage any youths, patients, families affected by epilepsy even adults to stand for the patients’ rights. Africa needs to change; only patients, associations and researchers may promote such change.
Thank you God I am a mum with a healthy child aged 3 and a half, LaK, gracias, merci, Thank you, Obrigada, Murakoze!