 We do at National Epilepsy Coordination Committee is establishing the Epilepsy Awareness Gap and the Treatment Gap and just trying to get to tell people what epilepsy is all about. So as you mentioned on Monday it's going to be the International Epilepsy Day and there's going to be a lot of activities happening in EMBO. In EMBO that is. We're going to cover that but before that I want to introduce your friends. Sylvia. Yes. Hi, all of you. Please use your mic. Hello, all of you. My name is Dr. Sylvia Mbugwa. I'm a Consultant Neurologist and I'm based at the Gakan University Hospital in Nairobi where we see lots of patients suffering from epilepsy and we carry out their treatment and we manage them. Thank you for having us on the show. Actually a fun fact, you two are friends but you met today. Yes, we do. So I'm glad that you're here to give us more information about epilepsy. I'm sure a lot of people have questions back at home. So what you can do is go to WhiteFair4Channel or the E-Circuit on Facebook, Twitter and Instagram then let us know what you would like us to ask either Sylvia or Frederick. Now let me ask you, Frederick. On Monday we are going to be celebrating it. Can I call it celebrating it? Yeah, sure. In EMBO. But why is it not as publicized if I may ask? Well maybe I start by saying epilepsy first of all it's a condition that is grouped in other conditions that are called non-communicable diseases. You have cancer in there. You have diabetes in there and so many others. But all along and in the past you've had epilepsy not been actually given an opportunity or to be highlighted in so many ways. And as an activist and in my role of trying to raise awareness in communities that could be a possible factor because epilepsy again it's one of the condition that is highly stigmatized and there are so many myths and misconceptions about this condition. About this condition? Yes. In Kisweli like your t-shirt says Angaza kifafa. Angaza kifafa. Breaking the silence like this. Breaking the silence. So it is more saying that it has been there because you get back even for those that are Christians will tell you at some point Jesus healed somebody who had epilepsy. Exactly. I remember that Bible verse really clearly. Yeah, sure. And even from that point because if you read that verse it says the guy was prayed for and the demons for epilepsy came out of that person. So all along people in other spaces think that epilepsy it's a demon possessed kind of a condition. I come from Mombasa and there is a lot of which craft seed believes down in Mombasa. My passion to actually talk about epilepsy comes from a point where my sister our last bond sister she is now 13 years old was diagnosed with epilepsy at the age of 2. And as a family we also didn't know much about epilepsy. There wasn't any documentation or no nothing. And it wasn't an easy thing to live with somebody who has a condition that you don't have no idea how to handle the situation. Yeah, you don't really know what is all about it. Actually before you continue there's something we were talking about earlier. The specialists in this field they are epilepsy there's only like two in the country. That's ridiculous though. I mean why is that? Actually epilepsy is a part of a group of disorders which are called the neurological disorders disorders which affect the brain and the spinal cord. So they are actually more than that we are about 14, 15 neurologists for the entire population of Kenya which I think is about what about epilepsy specialists? So all of us are actually trained to treat epilepsy all 14 of us but you can actually go down and do a subspeciality in epilepsy. So these are what are called the epilepsy logists now who just focus on epilepsy alone but for the all of us 14 of us we can actually treat epilepsy all neurologists all neurologists are trained. So epilepsy is just one section of part of the neurological disorders. So they are many more. But in terms of treatment because it's not something that's curable you can only treat it. What would be better to deal with a specialist or just a neurologist? For Kenya right now the neurologists are very good because we don't have that capacity to say let's leave them to the epileptologists and epileptologists are not necessarily neurologists because neurologists are wide spectrum of diseases anything to do the brain and the spinal cord be it strokes be it headaches be it some of these degenerative diseases like the dementia diseases of forgetfulness Parkinson's So epilepsy is just one section inside neurology and it has to do with the brain. Yes it has to do with the brain. Just for a minute if you can let us know what epilepsy is as in how how does it affect the body what does someone go through during that So it's very important to know this also as we do try to create public awareness because a lot of people come to us who've suffered from epilepsy for years they've never really known that that is what they're suffering from and they can get help for it. So as I'm afraid here said a lot of people have treated that it's witchcraft many of the patients back home up country are hidden at home because it's a disorder that comes a lot of motor as well as sensory abnormalities So in a nutshell epilepsy is a disorder that affects the neurons meaning to put it simply the nerves of the brain. So we have abnormal firing of the brain neurons with abnormal electrical activity So it's very disorganized for instance if I want if I tell you Michael walk from point A to B a message is sent from your brain in a coordinated fashion that actually goes down to the brain spinal cord to the nerves and tells you now coordinate So there is a synchronized activity from the neurons in the brain to the hand Michael needs to walk and he will walk by moving the leg in this fashion. So with epilepsy you get this abnormal firing of the brain neurons so the message is totally unsynchronized it's totally disorganized and what happens is that you get abnormalities of both motor meaning patients can actually fall they get fitting what is traditionally known as the kifafa now the jacking of the arms and the legs they also get sense of normality sensations many of them actually lose awareness they lose consciousness during the event and they can fit some of them bite their tongues others pass urine on themselves and they are out and the total event will last about two to three minutes that's a egg tall face and then after the egg tall face patients go into what we call the post egg tall sleep where they are out for a brief period of about maybe another five minutes and then they begin to come around and the whole episode takes about maybe 15 to 30 minutes for most of the patients where they appear confused they are disoriented they don't know what has happened to them during the entire event so there are many reasons presentation of this epilepsy which is what we call the semiology there some who can begin off with having funny sensations in the body others maybe find someone is talking to them they have episodes where they have momentary loss of awareness you're speaking to someone and you realize they are not with you they sort of become a bit confused so you need to bear in mind that this could actually be an epileptic fit that is going on so many people come to us they've not been told they've been treated for all manner of things before eventually the diagnosis is clinched so if you have any person you know who has that kind of presentation any slight symptoms any slight symptom you need to take them to a hospital and what is unfortunately is that at the basic level which is what actually as medical people we are fighting for and for those who have a share in the medical fields the organizations we are trying to strengthen our medical systems at the grassroots level you find there are not too many people who are trained in making a diagnosis so you find patients will tell you you've been going to hospital for years and nobody has ever told us that you are suffering from epilepsy so many times it's good to go to the bigger hospitals either the county or the district or the provincial hospitals to get a proper diagnosis to get a proper diagnosis because once a diagnosis is made we have treatment for them but again you have to do some investigations because there is some epilepsy that is primary like as it will tell you familial idiopathic epilepsy where you will find that someone in the family family line suffer the epilepsy at some point and they also genetic involvement in epilepsy formation and then we have what are called the secondary epilepsies we are now conditions if you've had meningitis you've had intracranial infection they can affect your brain yes they affect your brain and they can actually predispose you to developing epilepsy you can also have patients who've been involved in accidents patients who've had head injury so if you like even a concussion can cause epilepsy not really a concussion but traumatic injury where you probably get a bleed in the brain where you get substantial injury to the brain tissue the parenkima people who've had strokes affected areas of the brain where there is they are necessary for propagation of the abnormal seizure activity tumors in fact many people the first time they are ever diagnosed to have a tumor they present to the hospital having had a seizure when you go in and do a brain image beat a name or a city you find there's a tumor sitting in there that's the first point at which they are diagnosed so it's very important to get these people diagnosed because you might find curable cases depending on what is causing whether it's primary or secondary so depending on the cause of the epilepsy it can be curable it can be curable but if it's something that is let's say genetic yes I'm a passed down then that's when it's just treatable not curable yes so for the primary causes of epilepsy we have the anti-epileptic drugs of which now they are readily available in Kenya maybe cost is what will be a constraint to many of the patients but the drugs are available and there are actually some of the basic drugs which have been used for a very long time which are even available in our district hospitals and our county hospitals and patients when they are put on this medication they actually become seizure free and they are followed up and they can go back to their lives because you find what epilepsy does it impairs your motor activity your cognitive ability you find children become slow in school they fall back in studies they don't do too well and also because of the stigma yes they become self-conscious yes and they also separated isolated by the rest of their colleagues but for a lot of people think this is witchcraft or somebody has looked at you badly or there are some demons which are attacking you which has always happened traditionally so once a patient is controlled and is seizure free they can go back to their day to day activities and what we also want to I highlight is that when you are diagnosed to have a seizure when you look at the international guidelines the Americans are much more stricter you're not supposed to drive for one year from your last seizure because can you imagine what would happen if you get a fit when you're on the wheel you're a danger to both yourself and even to the people the other road users so you're not supposed to drive for one year could that be another reason there are some people yes there is stigma but there are some people who don't want to declare it yes just in case they might not be able to do such things like drive that is very true unless in cases like that yeah sure I mean when you talk now about rights for people with epilepsy there is a lot that comes into play as much as in we are trying to tell people that people with epilepsy they can do anything that any other person can do but there are things that need to be described in a manner that is understood to them I had a case scenario of a person who had epilepsy and because he had been in medication for a long time he was seizure free and he got a job to work as a PSV driver yeah and it was unfortunate that one day he got a seizure while driving and having patients and having passengers and he caused an accident you know he caused that so it's just safe to just declare it just for yourself for everyone else around you it's safe to declare it in any field in any field of work actually because again it gives every other person or even the employer an opportunity to understand what actually needs to be taken into place and I would think most employers these days they're not you know like way back when they can cater to you they can make sure you're comfortable within the work place right yeah they still they still a challenge though because again last year I dealt with two cases of people with epilepsy who were being laid off work because at some point they had a seizure at work really yes and but I had to even go in and even talk to the employer you know this person has been seizure free because they are under medication that's making him to manage the condition and manage the frequency of seizures if you lay them off by virtue of them having just a day that didn't go so well and so they had a seizure you know it's more of telling them go back home and continue having seizure because you'll not have a pain to even buy medication then I understood from that point it's only that some of these employers have not had a prior information about what this condition is all about because they were really sorry to have wanted to lay them off work without really understanding what this person was going through yeah so they got they got the people back to work and they said they would support them now this activation on Monday in Embu first of all Konini aiko up on Nairobi because I'm sure a lot of people want this information yeah sure I know I've just learned a few things and people back at home as well but okay sa onto this Embu what's going to happen in Embu let's say if I come to Embu and attend the activation okay so National Epilepsy Coordination Committee have a this campaign they call Angazaki Fafa okay which entails going from county to county and you know spreading the word about epilepsy and what happens is on the day where you have people going to a county first of all because of course of the deficit that Taktari has talked about of not having specialist neurologist being having neurologist you can think of 14 of them for the whole country that's still insane yeah and a few of them that either have specialized in epilepsy so it means then that a lot of these medical staff in the sub county hospitals in the provincial hospitals needs to be given this information so that at at least they are able to do the right diagnosis for for epilepsy and also prescribe the proper treatment that's needed so National Epilepsy Coordination Committee with the experts that they have the few neurologists the few epileptologists that they have they will go to a county they will do like a training or a seminar for the medical staff like a one day seminar they will be taught on the basic you know epilepsy facts and the latest medication that is there for epilepsy and how actually one would be able to diagnose epilepsy so when the medical staff is empowered on this other side they can be able to they can be able to to take it up from there and then on the other side now of letting the public know about what's happening what is epilepsy there's always a roadshow caravan for the Angazaki Fafa campaign and would trans transverse the whole county and talk to people about what is epilepsy and refer them now to the same hospital where the doctors have already been trained where you've given them the proper information yes so that by the time people go there they will not just go there and find nothing but they will have people who have information to hear them out and to do the proper I like that let me ask you before you continue are you going to schools because I think especially in schools like in primary schools that's where the stigma is the most so yes on a personal level again since 2014 because my sister got help on 2013 right here in Nairobi the first epilepsy open day that had been organized again by NECC I came all the way and I was lucky to meet one doctor who again after seeing the passion of coming all the way decided to come down to Mombasa to see my sister that is so nice you know and put her on medication so six months later when as a family we had also seen great changes my sister was having seizures at a frequency of 20 minutes you see so you can imagine what that would translate to in a day so it was even affecting her personally yeah it was it was and so six months later the medication had really been able to cut down the frequency of seizures and I began asking myself I mean how many other people out there are really suffering and having these seizures and they are not able so I began going to schools in my county going to churches educating them and letting them know yeah and going to chief barazas you know by this time I'd also done a lot of epilepsy research to just get to understand what is this condition really and when I got touch with the doctor he also shared so many so much other information you know so yeah there is need actually to do epilepsy awareness in schools and not only the basic epilepsy you know information but more so the first aid which I think maybe we can just mention a few about that later yeah later on thank you guys so much for coming but before you guys go Dr. Sylvia I just want to thank you for everything that you're doing with and for Frederick you're a hero incidentally in addition to what he said this is also the climb up mount Longanot which is scheduled for tomorrow also organized under the umbrella of the NCEE and this is actually been organized by Dr. Dilmach all the way to the top yes all the way to the top you'll climb no I'm not climbing oh I know my colleague is called Dr. Dilraj Suki also from Aga Climb you'll climb for you yes he'll climb for me so I'm here today he's doing tomorrow yeah to try and raise funds he can put up the channels through which if anyone is willing to support the cause of epilepsy they can actually do so I like that I want to do something Dr. Sylvia I'm sure that people back at Tomo would want to you know get some more information and of course get some more information even in Embu because I'm sure the Embu people watching right now how they can get involved but first Dr. Sylvia what advice can you give someone back at Tomo right now is probably has a kid among them themselves they just discovered they have epilepsy like something small to help them manage themselves and also your contacts okay Fred alluded to what can be done when a patient has just suffered a fit what you do make the patient comfortable move them away from any surfaces or objects that can endanger them if they are in the kitchen make sure they are not near any open fires if they are cooking any sharp implements knives keep them away from table tops but don't try and stop the fit the fit will go through its sequence and it will eventually abort on its own just turn them over into what we call the recovery position which is the left lateral lay them on their left with the right leg above the left cross it over and don't try and put anything in their mouths what people have tried to do is put a knife or a blade or put your fingers in the patient's mouth because the mouth seems to be going on continuously what will happen you will injure yourself and the patient can injure themselves so just let them be let them lie comfortably maybe you can put a pillow under their heads and that's it if the seizure begins to last more than 3 to 5 minutes you don't need to wait for it just take them straight to a hospital because there is a danger of a prolonged seizure what we call status epilepticus that run is a danger to the brain it could result in reversible or irreversible brain injury so for prolonged seizures get them to the hospital so once a seizure has gone by people who are known to suffer from epilepsy on medication those ones know what to do they've been advised so just make sure you don't miss your medication but for the rest get to the hospital as soon as you experience your first seizure and then another important thing as you're raising awareness for epilepsy is what are your triggers infections, colds, coughs poor sleep very poor sleep hours extreme stress whether it's at the workplace at the home front social stressors all those and especially for women around the premenstrual period we find that a lot of seizure activity can actually be found to increase around that time so if you find any of those things get to the nearest hospital and if you find that your nearest hospital doesn't know anything ask for a referral to the next level of hospital and they will surely know what to do and of course because of all the good work you guys are doing they will be equipped with the proper information yes your context plays where someone can reach you to get more advice so they can get me on my email which is sylvia.mugwa at akau.edu we'll share that with Michael he can actually put it on all the social media sites you only have a few minutes I won't say much I think for those that need more information they can visit the national epilepsy coordination committee website there's a lot of information there what's the domain it's www.epilepsykanya www.co.ke www.epilepsykanya.co.ke yes yes so that's the domain you can visit there and get a lot of information from there and also on my social media pages fredrik beuchi I share a lot of stuff how do you spell that first of all beuchi beuchi it sounds italian doesn't it so beuchi is b e u c h i it does sound italian b e u c h i fredrik beuchi in all my social media platforms there is a lot of information there we can always get back to you and share and of course the rest of the information of how you can support I'll be going I'll be climbing the mud long note tomorrow with the rest of the other team we will also post that information of just how you can send in your donation to help somebody access medication or get the proper diagnosis if they have epilepsy okay thank you very much we appreciate all the information you've given us thank you for your can I call it continued sirs yes you can to the people thank you very much guys that was Dr. Silvia and fredrik beuchi that's italian though that's very italian so if you need any more information now you know what to do that's what for for channel or the e-circuit on 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