Aishwarya Pillai, Rehabilitation Counselor, Blind Filmmaker, Artist

Before losing my eyesight, I cherished travel as one of my greatest passions. But when my vision faded away, the world transformed into a different place. I reluctantly abandoned my dreams of exploring new destinations on my own. However, with the assistance of innovative technology, I started to regain my independence and reduce my reliance on others. Over the past two years, I took up solo journeys to various Indian cities, made possible by these life-changing technologies. Yet, during my recent visit to Dubai for the annual Accessabilities Expo, my perception of accessibility underwent a profound shift. I realized that genuine accessibility is not solely about assistive technology; it encompasses the very fabric of our infrastructure. In India,
I distinctly remember navigating footpaths riddled with potholes, deteriorating structures, uneven terrain, and vendors obstructing the way. In stark contrast, Dubai boasted well-maintained footpaths, complete with ramps. Even the smallest shops had ramps, and accessible pathways were available on beaches. The only place that my friends who use wheelchairs would not find the ramps was the desert.I gave the roads a thorough cane-scan, but guess what? Not a single pothole wanted to play hide-and-seek with me!
In India, crossing a road independently was a formidable challenge, with vehicles rushing from all directions. In Dubai, whether it was a luxury car or a modest vehicle, drivers uniformly stopped at pedestrian crossings. They even had a button system on the main roads that, when pressed, displayed a green signal for pedestrians to cross safely.  I  indeed felt like a VIP, well, not a ‘Visually Impaired Person’, but ‘Very Important Person’ whenever I crossed those roads.
Taking an elevator in India could be an uncertain endeavor at best. For someone with vision impairment, it could be a frustrating experience as one  is not sure if they have reached the floor they meant to reach.  Only a few places, such as airports and select corporate buildings, had elevators with audio feedback. In Dubai, even the smallest elevator incorporated this feature, making it easy for me to ascertain my location.
Beyond the remarkable infrastructure, what truly set Dubai apart was the awareness and sensitivity of its people. They knew how to interact with someone with a visual impairment, yielding the right of way and patiently waiting for me to pass. In contrast, back in my home country, people often seemed oblivious, hurdling over or inadvertently obstructing my path as if I was some kind of video game monster and they had to get to their destination before me.
It’s worth noting that some may argue Dubai’s status as a developed city, and I don’t contest that fact. Nonetheless, is it unreasonable to hope for a similar transformation in my own country? While developers create advanced and often costly assistive technology, one can’t help but wonder why we don’t invest more in making our infrastructure more accessible. The government often distributes assistive technology products, sometimes without considering the actual needs of the recipients. Could these resources not be redirected toward creating a more inclusive infrastructure? Just pass me a cane, a smartphone for directions, and some friendly pathways, and watch me go from Kashmir to Kanyakumari all on my own. It’s like having a personal tour guide in my pocket! I am sure my friends with visual impairment would agree with me.
I’m not here to blame; I’m simply sharing my thoughts. As someone who calls this country home, don’t I have the right to live with independence and dignity? Enhancing accessibility and improving our infrastructure could make a world of difference, allowing people like me to lead more fulfilling lives in the land we proudly call our own.

Suman Gayen

My name is Suman Gayen, pursuing masters in development from Azim Premji university Bangalore. I am a person who is totally blind.

My native place is West Bengal that is about 2000 Kilometer away from Bangalore. Recently, I went through a 40-hour train journey from my university in Bangalore to my hometown in West Bengal. This is the second time in my life, that I had travelled alone for such long distance, albeit with some courage and precaution. I had documented this journey, to share my experience negotiating people’s attitude towards me.

Useful tips before starting a journey:

1. Have only one bag (preferably shoulder bag).

2. Keep your white cane outside for easy access, (preferably in side pocket of shoulder bag)

3. Have some cash in hand, for seamless transaction with train vendors.

My journey

As my boarding station (SMVT Bengaluru) was 22 Kilometers away from our college campus I booked a cab to reach SMVT station. There is also no direct bus and the time was morning that forced me to choose cab-booking. Otherwise I would have preferred to go by bus, as it is very less expensive and gives opportunity to interact with the people to change their attitude towards disability.

While going by cab I was tracking the route on google map. If I am commuting or travelling in a city, I will always prefer to keep my ears on google map. Once I press the (start journey) button after entering the destination, the map will let me know where I am now, how long will it take more to reach my destination. In fact, we will easily know, if the destination is reached. Once I have reached the railway station, the cab driver took me inside of the SMVT station. Else, I would have asked any strangers to give me directions.

Once I entered into the station, I stood beneath a loud speaker, so that I can hear my train announcement clearly. When the board showed the platform number for our train, I heard that our train will start from platform no: 5. My train was Howrah superfast express, (12864). I then moved forward to go to platform number 5 and get on the train. I reached the stairs by following the crowd. I was trying to find someone who could help me in identifying the platform. Meanwhile, a lady herself came to me and asked politely: do you need help?. I answered “yes, I have to go to platform number 5, could you help me?”. So the lady said, “yes, come along with me”. We then went forward. I did not hold her hand, I used my white cane and was walking beside her. She was sometimes giving me oral direction, for instance turn left, now go straight, I followed her guidance using my white cane. Yet, for stairs or places with clear tactile markers such as pillars my cane was sufficient to instruct me well. I felt independent in those instances.

While walking, I got an opportunity to know about her, that’s why, whoever I am with, I interact with him or her; it adds value to my thought process. I must mention another point here, people themselves come to help us in rare cases, we ourselves must ask others for helping, if needed. We should never hesitate, about asking for help where needed. On the other hand, we have to be cautious in seeking help, because we may get cheated as well. Therefore, develop your own method for help-seeking, keep the method in mind as much as possible. I always stay very active while going along with a stranger, meanwhile I observe his/her speaking (like tone, pitch, usage of word etc.) to have a rough sense of how trustworthy the person is.

Moving on, in my bag I carried a chain and a lock to lock the bag with the train seat. Having located my coach and seat, I locked the bag and I attached that with the train seat using the chain and same lock. Locking bag makes me free to sleep peacefully or go to washroom anytime.

For identifying the coach, I asked that lady to drop me before the coach (B2). My seat number was 1, I read the Braille label for finding the seat no: 1. Having sat down I relaxed for some while. Overall, it was a safe and secure seating as the ticket was for 3^rd AC.

Dear readers with visual impairment, I suggest you book at least 3^rd Ac for following reason:

• It would always be less crowded, that ensures your seamless mobility inside the train coach;
• The washroom of these coaches are more neat and clean, compared to sleeper;
• Such booking will reduce your luggage as railway provides pillow, bedcover and blanket only for usage during train journey.

Before continuing, I must mention that please have thorough mental map of entire coach, including the washrooms. I have travelled more than 25 times with my parents and others throughout my life. So, I am fully oriented with most of the train coaches like sleepers or 3 tier AC. Having better orientation is very significant here because we have to pass through the gate for using washrooms, sink or dustbin; the gate often remains opened that raises the risk of falling (outside the moving train!) especially when we are sleepy. Falling from a moving train is like falling in love with death.

On this topic, I would like to share a real incident. I heard of a person with with blindness who was travelling alone by train.  he was moving towards the washroom inside of a running train. As he went just after he woke up, he was still sleepy. As a result, he assumed the door of the train coach as washroom door. As he crossed the train door (which was already left open by passengers) he fell from the running train on the rail line. By the time people discovered him, he was no more. This is an incident I am sharing to create sense of warning among my visually impaired readers.

Going forward, I interacted with other fellow passengers. One of them was an IT person working for TCS. He was even working from train, on his laptop, continuously typing! Interestingly, we were frequently discussing many things like corporate culture, especially, when he was getting poor network. He offered me biscuits several times, but I only ate after I felt comfortable and that he can be trusted. But a note of warning to my readers, it is not good to accept any food shared by other inside the train. Later on that IT person brought an Egg biriyani from a platform vendor for my lunch, as none of the vendors were entering inside our coach for a long time. These are some instances where other passengers can help us to smoothen our journey.

Another example, on the next day morning, I had to buy egg biriyani. By the time I shouted, the vendor had moved away. Next time, when another vendor came, a passenger himself called the vendor and asked me, will you buy biriyani?, as I showed interest, he took one packet, gave the vendor Rs100 from me, and returned Rs10 to me, since the biriyani cost was Rs 90. However, I did not talk so much to the co-passengers as people are not generally talkative in AC coaches unlike Sleeper coach.  I was sleeping and calling my friends on phone instead. Apart from these, I was sitting quite, to feel and get immersed with the train journey. Finally, I watched a famous movie (Dangal) with audio description for entertainment. (this audio description support for movies is developed by Saksham team) . In this way, I went through the 40-hour prolong journey. After getting out of the train, I planned that I would ask someone’s assistance to go out and take a bus. Yet, my best friend was eagerly waiting for me to join him; therefore, he came inside our coach to pick me!

Thus, my story ends here. The moral of the story is that, It is never an impossible task of travelling alone by train, a person with totally blindness. Our other senses are sufficient for most of the work; however, taking help sometimes eases lot of tasks like identifying the coaches. With that, we should always try to seek help from the strangers so that our parents and others don’t have to come along with us. If we are dependent on others to accompany us, every time we travel, it will be a loss of working day for them as well. Ofcourse it will be an ideal situation if the railways station and train coaches are fully accessible for blind persons such as braille label etc.

Also, please keep in mind, to not ask repeated and heavy favors only from one person. We should always seek smaller support from as many people, preferably, it should be things they were doing for themselves. For instance, the lady earlier was also going to the platform No: 5, I asked her to take me with her. In another case, as no vender was coming inside the train and the IT person was stepping out to buy lunch for himself, I requested him to buy something for me as well.

Finally, dear readers, solo-travel is worth-exploring, but keep in mind, we must have courage, confidence, and cautiousness.

Some people refer to me as strong, others say that I am a warrior and a fighter, others say am a champion, resilient. All these are names given to me, so I don’t know if they are compliments or critics. However I take them all knowing that I am all these things that people call me. Wait a minute, what is the real name that I commonly use? My name is Sharon Aluoch, am from Kenya, Africa. The year I was writing this piece I was about 26. Well, what can I say? My life hasn’t been that easy, it hasn’t always been a walk in the park. Let’s walk through my life together. Stick around till the end and you will know more about me and what it has taken for me to get where I am today.
I had meningitis at the age of 9 months which left me with paralysis on my right side of the body. Meningitis is a brain infection that can cause severe damage to one’s spinal cord. Two years later, a house help fell me down and never told my mum about it. I grew up having mouth twitches but I could never figure out how come I was having such episodes. However the year 2010, April, I had two attacks at midnight in two different nights. My parents thought it was a demonic possession and such stuff had to be taken to the pastor so that they can pray for me. This is because every time I went to the hospital, I was always told that nothing was wrong with me and we could go back home.however, I remember in the mid-morning of August 27th 2010 as it was just yesterday. I was doing my grade eight exams called here in Kenya as MOCK EXAMS. These are special examinations given to test how prepared one is for the final examinations called here in Kenya as Kenya Certificate of Primary Education. (KCPE). It was about 11 am when I started having a kind of a heart pain. I immediately told our invigilator that I wasn’t feeling well. I then fell unconscious and couldn’t remember what happened. When I woke up, I found myself in the back seat of a private car being rushed to the hospital. It took those nurses a couple of hours to attend to me when we arrived there. During that period of time, I was having attacks. I was finally attended to after waiting for 5 hours. When I arrived to the doctor, I was sent to do a CT scan which would then determine what was happening to me. That day I was diagnosed with epilepsy. This is a neurological condition that makes a person prone to seizures or convulsions. This would mean that I would be taking antiepileptic drugs for the rest of my life. I was diagnosed with this condition when I was 14.
Since then I have learnt to be strong for myself. I went through a lot of hardships like bullying. This is because I was always in a normal school and never in a special school for the disabled.I have experienced stigma even from my family members; I mean all the people around me are normal. Why would they want and need to understand my situation? I have had people in my life who never wanted to be my friends just because I was on disability, I was been called names just because of my disability. The saddest part is having an invisible condition that whenever you are sick, people think you are lying or pretending. That has been my life, even when I say am fine, sometimes deep down somewhere I know that I am not fine, I still stay strong because I know that everything that I have gone through in life was worth it because I am stronger and stronger each day. I have completed my studies and I am now pursing Counseling Psychology and I am also advocating for people living with epilepsy.
As I wind up, I don’t know who is reading this or who wants to hear this but I just want to tell you whoever you are; things will get better in time. Don’t give up, darling! Remember that you are not alone and you are too strong to quit. Everything you are going through right now will be worth it. People may have said you wouldn’t make it but I know you can prove them wrong. However bad the situation is, remember that you got a friend in me and we are in this together. Normal people won’t understand what you are going through but imagine I do. Whenever you are stuck you can count on me.
Follow me on facebook as Sharon Aluoch or instagram as aluoch.sharon and I will be there for you.
You are too strong to quit. Remember, if you overcame it before, you will overcome it again. I believe in you.
Keep fighting till the end because you were born a fighter. Remember, once a warrior always a warrior
THE END

I am a mother with two (2) daughters, aged 13 and 17 years, respectively. Both my daughters have epilepsy.
AVAILABILITY OF ANTI-EPILEPTIC MEDICATION
My daughters are on the same prescription of carbamazepine and lamotrigine. In some cases, I can get carbamazepine free of charge at the local government health center, but they never have lamotrigine. Lamotrigine is expensive. I need $80US every month ($40US per child) to buy the drug; I have no option as after assessment the Carbamazepine and Lamotrigine combination has been able to reduce their seizures.
This is a major concern. I am formally employed hence this has enabled me to buy their medication every month. However, we all know life is unpredictable. If I am to wake up one day and be unable to work or am unable to afford their medication, what will that mean? The thought scares me. If only these drugs would be available at government health facilities, I would be a happy mother.
STIGMA AT SCHOOL
The way school authorities handle cases where a learner falls ill at school leaves a lot to be desired.At the end of the day, as a parent, I wonder whether the fact that most employees in various sectors are demotivated has resulted in the birth of an attitude where no one cares about anyone.
Special Information about the learner
It is the norm that if one has a child with a medical condition, wherever the child goes, they make the relevant authorities aware so that should anything happen, appropriate assistance is given.
No one cares anymore
It is quite unfortunate that regardless of this information being availed, the child rarely gets the appropriate help from the relevant authorities. I will give an example of one incident when my daughter had a seizure at school. I was told by my daughters’ friend that a teacher had said ‘I don’t know how to help, since you are the friend, then help her.’
If these critical issues are left to other learners who happen to be minors, the situation becomes tricky. We come from different backgrounds; hence a mixed bag of information is known. This resulted in the learners inserting a spoon in my daughter’s mouth while she was convulsing after various opinions had been passed. When I got to know of this, I was heartbroken. A lot of questions went through my mind, i.e., what if my daughter had choked with a spoon in her mouth? But who do you tell, no one cares after all.REGULAR SCHOOL HEALTH EDUCATION VISITS BY HEALTH PROFESSIONALS
On the request of a parent, if the Ministry of Education would allow special visits to schools by health professionals to educate learners and teachers as well, on illnesses like epilepsy and others (health professionals would probably be better placed to know other illnesses that may befall a learner whilst at school).
It is important for this information to be given generally, and not appear as if it is targeting a particular child to avoid stigma. This will also help clear various myths around various diseases. For example, one learner came to me worried and said that my daughter’s saliva had gone on her jersey. Would it mean she now had the disease as well? I explained to her that it was not the case.
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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! 

In 1990 on 23^rd of January, a beautiful baby girl was born in Mission Hospital in Migori District (now Migori County). As usual the parents and relatives were very happy and grateful to God, but the mum’s joy exceeded all this.

The baby grew up to be a very jovial and healthy girl until the age of one and half years when something strange started happening to the little girl. The 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/witch doctors that they tried trying to sugar coat the name by calling them `prayer persons/men` but the mum trusted so much in her God and kept on praying for the girl and to seek medical attention.

The doctor told her that the girl was developing a brain condition because of the prolonged labor the mother had during the girl’s birth, what a shock! By this time, I was experiencing regular convulsions which were really stressing my mum.

I grew up and started going to school. 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 okay, not experiencing the same condition that me as a little girl was going through. 

But I like the heart that God gave to mothers despite all these; my mum didn’t give up on 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; she did so and for seven years I never had any attack, what a relief to the poor single mother!

Teenage Years’ Challenges.

When I was now in high school, I went to a boarding school far from home and in form two, the convulsions started again! It was a scary scene to my classmates, friends, and teachers. Worst of all, some of my friends started distancing themselves from me something that made me feel much pain.

My mum was called to school, and she took me to the hospital and this time round to see a specialist because I was referred by a doctor who told me it was Epilepsy, a brain condition causing the convulsions. The neurologist prescribed some drugs, and I went back to school, although this didn’t stop the condition completely, the attacks were regular and could come once after three months. This went on until I completed my high school, went to college, and completed, never giving up. 

As a young woman living with epilepsy, I have undergone a lot because of this, it took me a very long time to accept this. I couldn’t participate in some games and activities in school simply because people were cautious and afraid that i might get an attack and the other students would be blamed. 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. 

Whenever I went for an interview and the interviewer got to know about this, the interviewer would find an excuse to not give me the job. After all these experiences, I have now grown into a woman and have decided to accept and view Epilepsy as a condition like any other. 

I have also decided to start a community-based organization(CBO) where I create awareness and do sensitization on epilepsy to the whole community and even Migori county at large. In my county, my organization is the only one dealing with epilepsy as a form of disability and this has made me so happy as I touch the lives of persons like me positively by caring for their health and empowering them in many ways like recently, we empowered a girl who has epilepsy with a full scholarship offered by the county as one of our partners. I have also started a monthly epilepsy clinic and as at now, persons with epilepsy within my county and other neighboring counties can access the monthly epilepsy clinic easily. Accepting the fact that I live with epilepsy  has really helped me in my day-to-day life and today whenever a man approaches me for a relationship, even before I give in, the first thing I do is to tell him of the condition. What a bold and brave step!  This has brought along many “potential” suitors, by simply being comfortable with myself and forging ahead.

My view towards alternative medication

I recall when I completed my high school an old man from a place called Loliondo in Tanzania came into the 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.

Some people once tried to convince my mom to take her me to Loliondo but gladly my mum’s faith in God did not permit it.

How myths and misconceptions contribute to Stigma

Many people have different perceptions concerning epilepsy. Some believe it`s because of witchcraft, others think it’s because of something done wrong by the parent 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. In the sense that one with the condition can pass it on to another without, how is this even possible given it’s a brain condition that can be managed like other heath conditions? All these are but myths and misconceptions about the condition. This has led to so much stigmatization leading to high stress, depression and even deaths since so many people living with epilepsy and their parents/caregivers do not want to disclose and even seek any when they see them simply because they think epilepsy is transferable! All these are but myths and misconceptions about the condition. What matters is acceptance and once you have discovered the triggers for instance in my case it’s usually triggered by malaria, lack of enough sleep, hunger, and stress. Both positive and negative, so I try my best to avoid this.  I am always thankful to God for He has brought me forward by His faithfulness. I have been able to accomplish what all others within my age gap who don’t have the condition have accomplished. With confidence I can boldly say that epilepsy is not witchcraft, all that is needed is acceptance, medication, and control of the triggers. The kind of medication required especially in the hospital because people will talk negatively about them and even laugh at them! Some even run away from them. 

There`s also a very big gap of information between the government, health workers, education sector and persons living with epilepsy. So many people do not know that epilepsy is manageable and treatable because no one has told them, and this has led to lack of statistics on the number of people living with epilepsy. Many people living with epilepsy do not even know that epilepsy is a disability like the other forms of disabilities. That’s why, I decided to start the CBO to give people the right information and advise them on how to manage this condition.

`SHOUT OUT EPILEPSY`

Hello , I’m Ojijo Mbai Odhiambo from Kenya.I was diagnosed with epilepsy when I was 6months old due to loss of oxygen during birth. It has been a tough journey until now; I’m 25years old.

I had frequent seizures when i was young and didn’t know what they were. Thanks to my parents for their support for where I am today. I could have frequent seizures when I was in my lower primary school. At times I could just go to school feeling well, but experiencing severe seizures I could wake up in the hospital undergoing treatment. 

I was using phenobarbital until the age of 11 when I was stopped from the drug after a long period without seizures. All went on well until June 2015 in my final  year in high school, when epilepsy ‘striked back’. It was a weekend when I had a severe seizure attack. I wanted to go home but I was denied a chance.

Tough times it was not only to find that my father had passed on. Finishing my high school , my mother took me to hospital and my neurologist sent me to go for an EEG test and a brain MRI.

The results were discouraging, left neurons sleeping over each other, loss of oxygen in the brain and an injury on my temporal lobe.

It has been a tough time on my academic journey. At times having seizures in class, colleagues not understanding, most of the times out of school seeking medication while others are learning. There was a time I nearly got burnt inside the house while I was cooking and alone in the house too. Missing medication and stress are also a challenge. I must study for long hours to understand because of the side effects of the medication. 

It’s a blessing that God granted me the course that I wanted. 

It has been a tough journey in the academic sector but all in all, I’m finishing it soon. 

My name is Aubrey Chiumia, i am 35 years old, i was born in a family of 3 of which i am second born, i was born and raised in Malawi.

I am an epilepsy warrior, i started experiencing seizures at the age of 8, then i was hospitalized at St Johns Mission hospital for two weeks with Malaria after i had my first seizure, by this time my family and i were staying in Mzuzu District in the Northern region of Malawi. All this was happening at a time i was in primary school and doing my standard 3.

At first i could not understand what was happening to me and so did my family, we thought i was bewitched, this was due to the lack of information about epilepsy. It took me several years before i fully understood what epilepsy is. Epilepsy has rob me of so much, it took years for me to be fully independent and in school i had trouble with my memory, in school i would study very hard and when a seizure struck i would completely loose memory of what i had studied. I was very good at English and Mathematics, i found these two subjects very easy as i understood them well and would do better even without much studying. I did my education up to the level of form four but unfortunately failed to write form four examinations due to the lack of support from my peers and my teachers. In school i faced stigma, discrimination, i was underrated, together with memory problems  led to my  poor academic performance.

Besides having epilepsy i have gone to marry, i run a successful shop in the capital city, Lilongwe, I love reading the bible and most of my conversations with people are largely fused with Biblical passages, this is very important for me as i find peace in the words of God.

My message to the world is that people with epilepsy have the capacity to make different achievements in life as long as they are able to enjoy all their rights. Trust us with work opportunities, let us enjoy our right to  education just like any other human being and the respect we all deserve.

My message to parents and guardians is use every opportunity you have to learn more about epilepsy, how to administer proper seizure first aid, handle your children with epilepsy with understanding, do not be harsh and avoid presuming that our every mistake is deliberate.