 Welcome back. Welcome back. This is still why in the morning if you're just joining us you are on time for health Tuesday because today we want to talk about positive community perceptions and Attitude regarding epilepsy. What is your perception towards epilepsy? We want to debunk the myths that people have and you know just to educate you or create an awareness on what Epilepsy really is and for that we are joined by Caroline Lydia Naserian who's the CEO of sees the movement Yes, so you're going to tell us the story about this to our first tell us a little bit about about you carry Musaina. Thank you so much and thanks so much for inviting me to this session It's a great opportunity. We are by I can be freely born when to speak about Epilepsy Even help me remove the stigma basically Caroline Naserian is just a lady Who had her first? seizure when she was around 14 years old I was around 14 years old 13 years old I'll never forget you were in a wedding then all of a sudden I fell down the stairs The next thing I remember is looking up having bloody hands and in a hospital And by then my parents were scared They thought first I had fainted then after that I had recurring seizures as They went on my mother became so confused because no one in our family We don't have a history of seizures in our family. Yeah, my mom reached a point to her by She felt she gave up even she told God at one time. Just take this child away. Oh my this is too much So how they were very much or current? Yes, they were current and you can imagine my mom did not have any any in history or any Information about epilepsy so serving recurrent seizures. I was I did not have any medicine. So one day Lady approached my mom. I've cut this the story short so that leads to you know You can get there bits and pieces of everything and the lady told her about kawai Kenya association Kenya association of the welfare people living with epilepsy and They were offering information about epilepsy and so my first place to go my first clinic to go for epilepsy was at kawai At kawai, they're able to educate my mother. What kawai is about and what epilepsy is about I took they gave me my first medicine and it helped reduce the seizures to a certain degree But not as much. So funny enough had been called to a national school. So people are saying maybe this Someone went to a witch doctor I'll never forget Exorcisms that happened for me. I'll never forget a pastor coming to me the Bible. I'll never forget that My head so hard. Oh, I Pretended to have a no, I pretended. Oh God. It's a So that oh my goodness Then the pastor's like I see the demon has left and then after that I had a seizure I was told you do not believe and I said oh my goodness Maybe I do not believe then the worst thing about it Despite I going to a national school. I was really stigmatized People called me demon possessed. Oh gosh others even said I've been I've gone to a sorcerer People spoke evil about me. My mother herself was so discouraged. I understand why and sometimes She was in trade event to tell people it was going on with my life But God's grace was able to go through high school with the same same problem And I really thank God for my father and my mother despite them having such a hard time They were there to support me though. It was still very strange for them And now by God's grace I was able to finish from four and I was able to go to university But at the same time I was still struggling with With with epilepsy if there's one thing I want to tell people that Epilepsy is not just the recurrence seizures. It also affects your mental health Okay, it's more than that. It's more than that it affects your mental health. You go into depression Because of the stigma that's there. Yes, the people whom you think will understand you. They are the ones that don't even Understand absolutely no one understands you people think there's a demon people don't want to be next to you And that's the term as a girl with a boyfriend a guy, you know a boyfriend to come in and hold you once you tell them you have seizures once they once they See when you never see them again And it's something that's beyond you can do anything about it exactly and so when I finished university I mean when I finished college high school and I was going to college. I went into depression and Funny enough the people who supported me or people who do not know anything about you about me The thing they introduced me to was alcohol. Oh my I started drinking alcohol. I didn't know alcohol and Medicines with the deal epilepsy then did not go together. Do not go together But my friend I was drinking because if I drank alcohol, you'd forget exactly I forget the pain and This group was ready to embrace me. That's me Caroline. Don't worry when you have epilepsy. We love you Wow, and the people who thought going to love you I'm not showing them. I'm not showing that love My mother was there. She loved me. My father was there. He loved me. God rest his soul But my aunts my relatives they were not really to embrace me It was really hard for them and I don't hold them accountable for that my church They said I was demon possessed. I need to be exercised And that made me really hate church You really hate church. My mother don't forget. She's a deacon For those are pasta. Wow, and I hate a church to the core because I was to think about This they will see you they will see Some demon inside you and they will refer to that story in the Bible that the boy fell down Jesus, you know said that is that spirit. It should come out in Jesus And I said oh Lord, what is this? then by God's grace I was about after University I got a Scholarship and I went to Arizona State University There I got biggest culture shock Again, why people or Americans don't care about epilepsy. They don't care whether you have it or you don't So I went there. I was scared of telling them what I was going through. Don't forget. I'm still taking alcohol Don't forget. I'm still going through depression because one understands it Then I go to a community who doesn't know me and they understand about epilepsy and they understand Yes, they were ready to embrace me. They were ready to love me. They were not telling me I was demon possessed They knew this thing is normal. It's normal. I was given a car Wow, I was given the permission to do whatever I wanted to do. They didn't care They said oh let's just like any other disease. Don't worry. It's okay. It's okay So that was new to you. It's something that you've never really received got in such a reception I have never received such a reception I said I don't and say hey, these are zoom is our good people So I went through school and through university there. I was going for my master's there I went for my master's because I did my bachelor's here when they are for my master's and While doing my while doing my master's life was good. I had seizures here and there, but it was good Okay, then Time came for me to come back to Kenya As you know many of us. You don't like coming back to Kenya people don't like coming back to Kenya from America Just someone from America. You're coming back to Kenya. Oh, Lord Living the land of wonderful things Oh, Lord, oh God, I'm going back to Kenya, but in my heart. I knew that there's something I have to do in Kenya. I do not know what it is, but in my spirit. I feel there is something that I need to do so Well, we're still in America. I started contemplating should I stay here or not? I know I can stay here if I want to but should I stay here or not? Then I sat down. I thought I know like when I was in America. I had an aha moment. That's the thing. I forgot to tell you I had an aha moment. I said God Maybe a real Chairman what what is going on? What is going on with my life? I Expected God coming thunder and thunder storming dust come in time. Oh But it was still small voice. I know what I'm doing and then I sat down. I looked at my life. I Looked at my life. I'll never forget sitting by the lake. I I The lake they are because they are there usually many artificial lakes in Arizona because it's a dry place And I sat down and I started thinking and I said oh my goodness I really did not know what was going on, but I don't blame myself for it. It's the situation. I was in So time came I gave my life to Christ when I was there Wow, and I came back. So you stopped hating the church now you? I'm not my mom or set. I didn't eat it. I kept it my secret I said I'm not gonna tell anyone I'm set because I don't know I don't know a Bible camping ceremony again No, I said I'm not I came back to Kenya They're stigma. Oh, la la. I was like dear God. I take that airplane back and go back to America The stigma was just there As he was asked do you still fall not even do you still have a seizure just fall Like this person do you still fall? Why did I come back here? Then I had such a struggle getting a job Here in Kenya because I was told I was overqualified overqualified overqualified because you will see my Certificates Arizona State University masters in whatever and I did not get a job Then I started desiring Mandazis Yes, from having a masters in Arizona University. Yes, selling Mandazis Selling Mandazis, then we'll make fun of me. How can you talk America? That I'm still having seizures so my mom used to tell me don't get to near to the fire Just stay away from the fire And I want that. What is the difference between us here and Americans the Americans are able to understand then I still went on I became a part-time lecturer at St. Paul's University and I still went on and where I am at the moment about I do what I really love Which is communications, but in a lesson coming in last on position. So when I was there I started thinking What? Do I do with my life this stigma is so much at that time you're selling Mandazis still No, no, it stopped selling Mandazis God had already given me a job. Okay as a partner's lecturer at St. Paul's University Then by God's grace another door opened for me. I was able to get a full-time employment. I am right now and One day, this is what happened the stigma is still there one day. I'm trying to hide No, that's the other thing with epilepsy. We try hiding it. We don't tell anyone you have epilepsy I must take my bed. You see I'll go to the bathroom. Oh, no To know that I have Epileptic I hid it from everybody. I do not want anybody to know that I have epilepsy So one day I had a seizure in the office Were you working now? Yes, and it caught people flat footed They didn't know what to do. Yes, I didn't expect that and I'm telling you God always sends angels you path Never forget that you may be going through a hard time But during that hard time God sends you an angel God sent me a lady. I won't mention her name because he's usually loud saying I don't mention my name But I love her so much. She's one of my greatest friends She told me Caroline. Why didn't you tell us what was going on? I told her I was afraid they're not going to employ me and I was afraid how you're going to look at me She told me no, no, no, no, no, you did not do right. She'll have told us. We will not discriminate you And I said I interesting. Okay, then she referred me to Professor Amayo. I went to professor Amayo. Professor Amayo told me those medical jargons Then you told me Caroline come back. I went to professor Amayo. So who's professor Amayo? A neurosurgeon and neurologist Okay, he's the leading neurology one of the leading neurologists in Kenya. Okay. Yes, professor Amayo is one of the best and I sat there he talked he talked I'm looking at him I'm wondering what he's talking about is Yes, how you have this you have this then I came back. Okay, dr. What is going on? You tell me let's talk. Let's talk. What's going on? He took my my my experience. No, this is the funny thing Experienced him to say there's something in your brain that is Causing all this He looked at my brain and said there's nothing Okay, your brain is normal. Then I asked him then what is going on? He told me your brain is like a fuse. There's a curfew somewhere the electric charges So they become too much that curfews tends to Overload that's you have that seizure and I looked at him and I told him so I don't have any problem with my brain No, no, no, you have to go and it's all what I'm going to do is change Your medication okay change my medication and Instead I started taking like 12 believe me or not The seizures reduced from once every three months to once every six months. Oh, wow Once every six months to once a year Wow They reduced drastically look at that and what he told me never miss Medication don't forget even I myself has said I believe in me Maybe there's a demon we should go and get some more prayers. I'm so tired of this Tonight then one day I said enough is enough I need to be the advocate of Removing this stigma From about epilepsy the community from the community itself For the first time I told people in my family That I am epileptic and I take medicine and this is the name of the medicine and I don't have demons Some people wanted to collapse some of my family members wanted to collapse Because I like we have hidden this for so long No, you know, I'm going to someone below too. I say it. I said this is the truth And the good thing is my mom Supported me. I was so surprised My mom supported me my friends supported me and also my best friend and still my angel I'll never she's always close to my heart She also Supported me then you ask me You are a man ask then a question comes to your head then what about family did you have a boyfriend? Now tell us no, yeah, the top of it's the road Yes, please tell us about it because you said that being you know having epilepsy it's hard, you know And it you know dating it's it's troublesome. So how did you get them because I know you're a mom of is it two or three? Two two and have one step son Wow, yes, tell us about it. How did you get there? So now I start a dating and I want I always use that part to so that you really love me or not because someone told me if you want to know that boy loves you Just tell them what your worst thing the worst thing in your life is that they are going to jump ship Okay, so I will go out with a boy go to the boy then I'll tell them, you know, I take medicine. I'm a epileptic Some of them run like the wind Lightning I think is faster than them Another time we're using Motorola, you know Motorola those big ones so you're like But then there was a detergent number will you pick up at iconic was also but then it was The phone the number you are calling is no longer in service Like okay, I'm what means you with them one minute no longer in service. I am dumbed Then my sister my my sister one who follows me she's so beautiful. She's like So people say Yes, this is better than you know, she's beautiful But my sister used to tell me don't worry Caroline right man will come your way. Yeah, funny enough my sister got married ahead of me Well, I'm the hotel. You see, yes, I need to get married you You Know still trusting God going to bring the right dude my way Then one day this man called Patrick comes my way I'm a tattoo driver to make it much better Wow Okay, interesting interesting I'm a tattoo driver with an Arizona University graduate Wow Arizona State University graduate what a coincidence. Oh my goodness. I expected a doctor or something Oh the mother to driver was not from Arizona State Oh, you are the one from okay, you did not come in a shot Arizona State University graduate with a my tattoo driver We marry by my tattoo driver. What is wrong Caroline? Then I told normal He's not is my husband. I told him then I might have epilepsy what I need from you If you are ready to do it, I just want it to be a spammed on my dad. Just give me children and go and go I don't need you. I don't need you. I don't need heart to bricks. He looked at me and said I Won't do that. I will marry you. I Told him you are joking Do you know he did? Yeah, six months into my into our dating which I was 50 50 my foot was there I was just a waiting in case you jump ship. I don't feel bad. You're not fully there. Yes. I just receive a call Do you know Kenyanya is here and they're with his family and they're bringing goods. You're like, what do you mean? You're here and they're not even informed me that time. I'm in on a trip You're kidding and my husband and his family have planned something which I do not know My mom asked me one question. You got married and you do not tell me. Wow When did I get married? They're here they're saying you're their wife and I love I love this man because Despite him being a matter to driver He was my uncle He stood the test of time and the same has gone on. We have walked this journey together God has blessed us with two children And also have a stepson and he always reminds me Anyone can be sick Anyone can die and I love you just the way you are So I really love Patrick because he stood by me and was the first person was a stigma test But what was going on and so and I told him that I had this idea of starting an organization To help pull the epilepsy. It was the first person to come on board and tell me why not? Take it out run with it run with it. Wow, we celebrate Patrick today Highly celebrated by us. Wow. Yes And as I'm still like crying because I remember knows It's for taking you back. I remember knows giving back when I was pregnant with my first son Joshua People are looking at me very funnily like though. It's expecting me to get a season get him his courage Do you know I did not get a seizure Nothing and I naturally gave birth to a 3.7 kg baby Look at what God can do what God can do After that in 2021 God gave me another one They all have I think they are just having kids 3.6 kg and you carried him gracefully. I carried him gracefully. I was like this You know, I was not and I was telling God. Thank you. It is possible. What am I saying? Even this this organization because now it's registry the end as an NGO You organization sees the movement. Yeah sees the moment moment sees the moment from that seizure Sees the moment therefore epilepsy should not stop you from doing what you can Epilepsy should not be a reason why you're not who you are I'm not boasting but I've gone to many many countries Despite Epilepsy and people listen to me not because of epilepsy They look at me as Caroline and one thing I'll tell the Kenyan community Epilepsy see kurokua There are some maybe who get an accident and their head becomes cracked the skull becomes cracked and immediately start having seizures Others are born with it others their brain did not develop well when they were young So they started having seizures so see kurokua. Yeah, there's a treatment like you said. Yes You just take for me lamyctal And it's not a lot just a little bit others they need more but the fact is Don't stigmatize just love us Don't tell us that we cannot do a certain job because you have epilepsy. No, I am smart You're not limited in any way. I'm not limited in any way. I love dancing I'm a mother of children I have a wonderful husband. God bless him. Even if we fight that's love. Yeah, that's love. I do that I have a supporting I have a supporting colleagues who tell me who really push me and tell me Caroline Epilepsy is not the end of the world and I want to tell people outside there If you have an epileptic child Or you are epileptic don't be ashamed. Can I shock you? Mm-hmm Nobel the one of the Nobel prizes was epileptic Look at that. You're the famous musician. Lil Wayne is epileptic. Look at that You know The first doesn't limit you. Yes Washington had epilepsy one of the presidents of america had epilepsy Winston Churchill You see people who have been so big great in the society and had epilepsy and they made a lot of progress Run around runs for the Nobel Prize And they're epilepsy right now people listen to Lil Wayne And he doesn't stop him from doing whatever he does Many great people have it and they are not and he doesn't stop them. Why is it that in Kenya? We are stigmatized so we need to break that stigma We need to break it and that's the moment is there. We are here to break it Yes, we were just registered the other day But I'm bent on telling everybody I'm raising awareness Please stop stigmatizing us No, we are also people We have the ability to do wonders as long as give us the opportunity You're just no more. I'm just no more It's just confused You know, yeah Supporting family you can do wonders but if you are in a community where you're stigmatized You have depression And you end up dying You know because of epilepsy but because of the stigma that brings depression Exactly. Everyone looks at you. We endure you But if you're staying with a family or we have a supportive system that helps you and that's what I encourage people There are many uh, if you have someone who has epilepsy There's kawai They can provide you with much needed counseling. There are neurologists outside there Whom you can see and they can give you the best information. There are people outside there Neurologists groups outside there who are ready to support you if you're a guardian don't hide your child If you have epilepsy don't hide another carpet Wake up do it because this is the reason why it's there I now have come to know the reason why I have epilepsy Is so that I can be the voice to the voiceless Have courage God has helped me. I went to a national school. I went to university And I got a scholarship to arizona state university Currently I'm pursuing my second master's So it should not stop anyone from doing anything. Therefore, I'm calling out even to our government. Please Support people with epilepsy Please what what way can the government support? One way is reducing the price of the medicine. Yes, like no la mictal The one I take it costs 250 shillings per tablet per tablet And I'm imagining and if we are taking imagine let's say four tablets a day. How much is that? Oh my goodness How many families can afford that from a poor family? Okay, the only way the canal is to Just away the child To the to the rural areas and the kind of America and the kind of society That's not good. So the government can come in by reducing the prices of the medicine. Yes And also they should and also I will ask even the government the MPs to lobby on our behalf The other thing is there's schools. They should introduce in their curriculum about epilepsy Many teachers do not know about epilepsy. They do not know how to handle children with epilepsy So even I'll ask the minister of education to include Epilepsy as one of the one of the disabilities It's not an ability But one of the disabilities that need to be addressed because currently the rate of epilepsy is rising up It's increasing. It's increasing. Is there a reason for that? Yes. What what could be the reason depression? So depression can lead to epilepsy very fast. All right. Second drugs Many young people are taking drugs heroin cocaine They're taking it in or even even this kufungua lock These small small spirits they pull take Once you start taking them and you stop most of them end up having epileptic seizures That thing it's You fall down you have an accident. Someone hits you on the head. Imagine you have epilepsy Another one you get a disease that affects your brain. You're cerebral part of your brain Most of them get epilepsy. So currently epilepsy is on the rise. So we have to accept it is there And the government should come in to help. Yes Reduce reduce the prices of medicine like lactic acid and all of them and also introduce this into the curriculum so that everyone Can know what epilepsy is all about and also educate the public I'm currently doing my research on the knowledge about epilepsy. It is so sad People even don't have a clue what epilepsy is even teachers don't When they're when a child has a seizure the first thing they do Put something Come come quickly the child has fallen down Then you have the the basic first stage Information. What do you do when a child has a seizure? What do you do? What do you do? So there's so many gaps Yeah And since the moment is there to help Sealing the gaps, but I need you. I need the media. I need people outside. They are to help us create awareness To help us create awareness so that we can be the conduit and guide this and guide people with epilepsy organizations that can offer help like kawai Engage which is led by dr. Degas a neurologist and even to Practicing neurologists like professor mayo so they can be helped. But the more we keep quiet The worse it becomes the worst it becomes so the moment you just come out and say this is going on You get healed Wow amazing And now you mentioned something about teachers not being aware of this and how to treat it Or how to you know react to a child who has epilepsy. Maybe you can educate someone Who's watching and has never Encounted someone who has seizures. What are they not supposed to do because people do the wrong things? I understand. So what how are you supposed to treat someone who has seizure? First having one seizure doesn't mean you have epilepsy Because sometimes get a seizure because your temperature is very high or something has happened So one seizure doesn't mean you have epilepsy when it is recurrent. That's when It's termed as epileptic others call it a seizure disorders others epilepsy depending on the terms they want to use So if someone who has an epileptic who has a history of epilepsy Collapses on the floor or has a seizure Never ever put something in their mouth You they are going to get choked and they can die Never just leave them to have that seizure until it ends. What you can do is you can remove any harmful Substance around them. So they will not hit themselves. But let the seizure end That's the first thing Once someone gets out of the seizure you always feel disoriented. You don't know what is going on What happened? So the people around that person should just let the person just rest first Get their bearing Don't talk to the artist. Don't ask them questions. Don't ask questions. Just let them get back their bearings And if they ask your question be honest with them But tell them but but I reassure them you are okay Then after that Don't give water Don't give water Don't give water Don't Why? Because you already come out from a seizure You have an electric current still going on. What does what an electric current do? You can short circuit So you you have to let me rest sleep For some time to get my bearing back And if I've hurt myself And you cannot be able to attend it to it you can take me to a doctor But if you can you can attend to it But don't run away Never put anything in the mouth and never usually see people trying to turn somebody never Let the seizure end by itself once it ends now you can take over It is scary. I won't lie to you. It is a scary sight But you have to be strong enough because this person Is weak at the moment and they need you to help them So if you are shocked and I wake up and I realize you're shocked then I wonder dear lord what happened I'm sure this what happened But if I wake up and I find someone who's holding my hand and tell me it's okay. You're fine. You're fine Just relax. Just relax. And I'm like, okay That's good. Yes I used to wonder What if I had it when someone in the middle of the rubble someone You know That's the other thing also protect this person for people who want to know some people they take advantage of this situation Where is the handbag? Where's the handbag and I get something on the handbag so even not even if you come and they watch man So you're everything at that moment With handbag so you're everywhere, but at the same time you're still watching the person But the most in them the best thing you can ever do once a person comes over seizure is just reassuring them It's okay. It's okay. Because if I see you're shocked I'm end up having another seizure Okay. Yes. So it's okay. It's okay. Just relax. It's fine. It's fine. It happens You have reassured me that all is well After some time I wake up dust myself Amazing Your story you've taken so much from it and I'm sure You know the viewer is now educated on matters epilepsy and You know breaking the bias that we have in Kenya in our community So what do you want to say to to everyone the community that is watching as we come to a close of this And maybe you can mention your social media handles where people can get you if they want to be part of The organization that you have created to you know to start this movement Yeah of ending the stigma. This is your camera. Okay Remember as the community you're the first point of contact With someone in the epilepsy So the way you react to them will be the way They will are going to react to other people and also be able to internalize it Inside them If you create a stigma if you stigmatize them most likely The person end up getting depression even killing themselves because you have no support Therefore as the community Be there to hold our hand Be there to encourage us that you can do more than people than than more more than even could think about How to jarogua we don't have an evil spirit. No We are just human beings like you and I anyone can become sick. None of us chose to have epilepsy None of us but with your support with your help I'm telling you people with epilepsy are going to go far and our government come alongside us Supporters lobby for us Because you have the you have the resources you have the channels to make sure that people with epilepsy Are taken care of even in the constitution We pray that you're going to add us into the constitution because epilepsy is considered a disability And even if epilepsy can you go and get us disability card? Which cannot even help you even get even know Get jobs wherever you are be able to live and to progress when life wherever you are because Removing this stigma make it a little bit of time But every every journey starts with one step I need want to know more about epilepsy and how you can support us because you're here to create awareness You can write to me through the email. See is the moment Dot kenya at gmail.com you can call me by my number 0 7 1 6 5 6 0 3 7 9 all 0 7 8 9 5 8 9 triple 6 Also, currently we are coming up with a Currently we are coming up with a with a good website. So soon it will be broadcasted But you give you want to talk to me the that's my number and don't forget You can be the best you can Wow amazing. Thank you very much Caroline. Thank you. It's been amazing and thank you for being a voice To the generation and creating The awareness around epilepsy All right, that has been Caroline Lidia Nasarian Who's the CEO of sees the moment creating an awareness around epilepsy? I hope you've taken something from it. If nothing just remember to treat People with epilepsy with love because they're just like you there's nothing that they can't do and if you have epilepsy Embrace it Talk about it because you are just perfect the way you are this has been Health Tuesday. We're going to take a short break at that brand sakua as well as kalami val are going to come on Bode to continue with some great conversations around Entrepreneurship the hashtag to use is why the morning at y to 5 full channel. See you on the other side