 share your views or ask us any questions we want you guys to feel free to do so on our social media handles which are right there at the bottom of the screen and all you have to do is put hashtag health on Monday and hashtag why in the morning and ask and say whatever you'd like to say do feel free and so do remember that right before this we had you can politics with Alex Karanja right now we are doing a health on Monday segment where we sit and discuss and bring awareness on different kinds of issues which people are going through either on a daily basis or just any health issues that people are going through today's particular health issue is one that we all have heard the name of but maybe we don't know too much about it it's called sickle cell disease and I'd like for our viewers to actually introduce themselves and then to come in and tell us exactly why they don't like to be referred to as sicklers or survivors and it seems like a very technical I don't know how to say we have to we have to refer to them the right way is it's all that they're asking for so can we please welcome thank you yes so this is James or Charlie is that right yes I'm James or Charlie so I saw this is Miss Napori sitting next to me yes my name is Harriet Napoli Harriet Napoli please speak up my name is Harriet Napoli Harriet Napoli so Harriet tell me how long you've been living with sickle cell and then Mr. James or Charlie can jump in and say as a clinical practitioner exactly what it is how long have you been living with it I've been living with the condition for 27 years now 27 years yes so basically all your life yes all your life on my life higher basi what is sickle cell and anemia or sickle cell disease and what's the difference between calling it sickle cell anemia sickle cell disease sickle cell disease it's a it's a disease that affects the hemoglobin which is the red blood cells of which which actually which carry oxygen within the body to different places now the normal the normal shape of the of the hemoglobin is my concave which is a bit circular but in fact but now when you have the sickle cell it has a deformity okay when you get an infection or you get into distress it changes the shape it forms a sickle like the way the sickle that we use to cut grass it takes to that form and when it does that yes and when that crescent moon yes it turns it changes to that shape and that's why it's called sickle cell now the disease is now the whole and the whole enclosure of all the processes that occur during sickle cell okay when you say sickle cell anemia it is anemia caused it is a by-product of sickling now why is it anemia where do you get anemia when you have sickle cell oh before we go into why do we get anemia a little bit about the terminology and in fact I'd like for you to explain it and then we'll come back to you and you'll tell us about the different diseases that come when you have sickle cell there is something I'd like for our viewers and our audience to get straight because I made a mistake as well when I was referring to you guys the wrong way so can you explain what do you prefer to people who are having sickle cell what do you prefer to be referred to as we prefer to be called warriors because of the challenges we go through each and every day because living with sickle cell is really I could say it's really hard and we try our best to be the to be the best we can we try just to fit in the society just like any other normal person despite the default deforming the form of ourselves that we try to be just like normal people and that is why we don't we don't we do not like to be called sicklers because actually we are sicklers yes but when you call us when you call us sicklers that brings us down yes because we have survived and we have fought that so you're not surviving you have survived yes we have survived already I see I see I see so now we can go back to explaining what you were explaining before about the different kinds of diseases that fall under sickle cell now sickle cell now has when you have sickle cell this is what you call crisis these are the episodes that come about with sickling now the normal the normal hemoglobin takes about a hundred and twenty days from the time it's produced to the time it dies out with now the sickle cells it takes 10 to 20 days only only wow now that means the blood cells are destroyed much faster because they are deformed that is one two since black the red pigment that we have on our palms and the pigmentation that allows us to actually have this pigment yeah it's actually because of the hemoglobin when it is produced it when it destroyed too fast it becomes lowered what happens now you become anemic and the blood is not able to carry enough oxygen so it's not everybody that has sickle cell that has anemia not at any given point not at any given point anemia is just one of the diseases you can get one of this one of the when you have sickle cell yes okay so when you have anemia as a product of sickle cell then you become sickle cell anemia anemic what are some of the other diseases so we can't refer we cannot refer to it as sickle cell anemia it's the sickle cell disease yes okay so the other symptoms would have would be something like jaundice which is the yellowing of the eyes that is because when blood cells are destroyed they they these are byproduct which is called bilirubin it is elevated within the blood when it becomes elevated you realize the yellowing of the eyes and the palms and when it becomes too much you know there's a problem okay I see then there's also then there's what we call now the episodes they actually have like now the painful episode is usually called a crisis now with that it means the red blood cells of sickle and they are blocking the capillaries within a certain region of the body when they do that the nerves on that end become a bit heightened and they what do what and what that causes is now you start feeling pain and now that pain usually comes from the joints the hands parts of the muscles and it is very severe now that is see that is a painful crisis or an occlusive crisis because it is caused by occlusion then there is there a plastic crisis now this one is when the bone marrow itself is not able to produce red blood cells at a very good enough rate and now you actually end up having very low blood cells and it is not because they're being destroyed but it is because they're not being produced yes okay then yeah there's something like sequestration which is now the splinic sequestration where the spleen enlarges and actually like was it becomes blocked and it becomes painful and eventually dies off on its own I see all right and as a sickle cell warrior hurry yet let me ask you what are some of the things a warrior has to go a sickle cell warrior goes through on a daily basis what are some of the struggles maybe that you'd like to share with us one of the of the challenges that are warriors go through is the frequent episodes of pain frequent episodes of pain yes the crisis because with sickle cell you can you can be laughing at one minute and at the next minute you have to be admitted maybe put in ICU for oxygen because it has no sick signals like you cannot just tell that the next minute I'll be sick at some time just gets abrupt and so it is really difficult for you to plan your life I like say tomorrow and be doing this and this and that so like to fit in a normal setting of a person without sickle cell and then another challenge is that when let's say when you are when when we are going to hospital sometimes when you are in crisis nobody cares about you especially in public hospitals you are in pain and you have to queue for for a whole day for you to be attended to like there was a time I when I was in crisis and I was taken to hospital at around 10 a.m. and I was being attended to at 4 4 p.m. and that was really 10 a.m. you went attendance the attending do you the attendance you got from doctors was at 4 p.m. at 4 p.m. and all this time you were in pain yes so those are some of the challenges a warrior goes through and then another one is it's really hard for warriors to get employed because you can like I said earlier you can be well today and the next hour you are not well so basically when you are employed your boss will not really understand your condition because you maybe you're supposed to be in work from Monday to Friday and due to that condition you may find yourself maybe you only had to go to job for only two days then the rest of the three days you may be admitted I see yeah okay it is really hard for warriors to be understood by their bosses and also get employment it's really hard for warriors to be understood by their bosses yes so most of them actually are mostly being fired and you know with our condition we have bills to pay because we are frequently in and out of hospital bills are just crazy I just crazy and you don't have any source of income to get off with that I see I see okay and now that you've explained the kind of how it affects your life on a day-to-day basis I'd like for our clinical practitioner to tell us how it affects the body you already said that what happens to the cells but maybe we can touch on what happens to the cells in such a way that it affects people in a different way because when we're discussing and we're trying to find out about medication and everything she's touched she's touched on going to hospital and I'm hearing actually that medication is quite expensive on a day-to-day basis and even then everybody takes medication differently she may be taking once a day another another sickle cell warrior will be taking maybe twice or another one will be taking four times a day could you touch on the differences or how people take them and what makes it this way okay now that comes in in terms of one the parameters that are used for you to be put on like say hydroxyurea you need to be having frequent at least three episodes or crisis within a year and there's also a danger of going into maybe stroke or priapism you're having you're constantly having priapisms which is a painful erection continuous erection in a boy or in a man so when you have this happening you try to to now raise the result you call fetal hemoglobin yes it is and it's a form of hemoglobin that is usually there when you still a child when you still in the womb but as you grow it depletes now to raise that you be given a drug like hydroxyurea which raises the fetal hemoglobin so that you actually reduce this number of crap crisis or episode that this person goes into in a given time yes now they're given differently depending on one the weight the age the severity of your crisis you'll find there are different parameters and they're also tied to where is your optimal dosage is yes so when they are tied to that it is very specific to that client I cannot give you the same drugs at the same dosage a giver I need to actually tighter it to your it is custom for you and custom for her yes of course it has to be it's custom for everybody yes yeah your practitioner will go with you we'll see you we'll get to know at what point at what level does this is this drug optimum for my client I see all right well thank you for explaining that much and wow you know this sounds like something that is of course we don't ask for it which then brings me to the next question genetics you know since we've already dealt with the fact that look this can happen to you can happen to anybody can we talk about how people do acquire it how it comes along and then we'll talk about how it happened for you and touch a little bit about the personal story and the personal experiences that happened once you figured out that once your parents figured out that this is what you had so sickle cell is a genetic disease it's mainly transferred to the child via the mother and the father both parents have to transmit the sickle cell gene which is the S gene now they we call them carriers they do not need to actually be suffering from sickle cell disease but they carry the gene itself when they do that when they have a child there's a 25% chance of the child coming out a warrior or suffering from sickle cell when that happens when they come and give birth when they transfer both genes to the child that is the SS gene it will go to the child now she'll be a full-blown warrior she won't be a carrier if she actually have half of the normal gene and half of the sickle cell gene she would be a carrier oh so there's a difference between a carrier and a warrior and a warrior yes our carrier does not suffer from the normal disease symptoms okay they don't they are they're just the same as you and me but a warrior has both she's she has all the genes together that means her cells already deformed all her cells are deformed so she does not she will actually suffer from the symptoms but a carrier won't right a carrier won't and there's something you said that that I found quite interesting for a warrior in order for someone to be considered a warrior not a carrier both parents have to have had sickle cell they must be carriers of the gene yes if one parent has the gene and the other parent doesn't have the gene then they cannot produce a child a warrior they have to produce just you know they can actually produce a carrier or somebody who has normal normal hemoglobin I see I see let me bring me to the next one you know this must have been tough for your parents you know it's not an easy thing and there's no parent who requests for any kind of hardship in their life when it comes to children most of the time when we're children are born they're bundles of joy so please explain to us your journey how it went when your parents first find out found out because it's not something they found out immediately is it it's not something they expected or even thought of it never crossed their mind yes until certain incident happened could you take us through that journey and speak up please okay I was first diagnosed with sickle cell at the age of three okay and that was after I had lost my two sisters of the same so when my sisters died they didn't know that it was sickle cell but it was after their death that my mom then decided to take me for the sickle cell screening test and that is when I was diagnosed with sickle cell and from the age of three I was taking drugs the paldrain and folic acid for all that period of time every day was like you have to take a drug each and every day so like drag and me just best friends I couldn't go a day without drugs and now that it was really a challenge for for me to get those drugs each and every day because at no point were those drugs given to the hospitals that I went so each time you go to hospital yes each time you go to hospital and you are prescribed to take those drugs you had to go and buy them outside from the pharmacies so that was one of the challenges that I had to go through as a warrior not being able to find drugs as a sickle cell warrior yes and I had to take drugs each and every day just as I told you earlier yes yes so my journey was actually in and out of hospital because I was usually admitted and do sickle cell when you are young you do most of the things you just want to play like any other normal child you don't know what is really happening in your body you don't know your limits so I could really just do activities like any other normal child but every evening frequently like on a weekly basis I could get sick and get admitted like each and every week so a week does not pass and this is when you're a child a week was not passing without you getting admitted yes okay and then there is this part that when I first realized that I had sickle cell I didn't really know what sickle cell was but I just when I was having pains in my joints legs sometimes fingers this sickle cell must must be a very strange thing because people around me were not having the same we're not having the pain that I go through like I could see people going through people could say I'm having headaches trauma cake but for me my pain was different so I really thought like this sickle cell is really a very strange thing like how can I be getting sick and I only have a back pain my legs are paining my joints my fingers at some point I could go to school and I couldn't write anything because I had crisis on my fingers you had crisis on your fingers the there's the pain that you're saying yes so to hold the pain was a problem and you know for some teachers who don't understand they can take you as a road student you don't want to listen to them you don't want to write so that is when part of stigma began back then when I was in NASA school and then there is this part of taking drugs each and every day so we wake up in the morning and you want to go to play and your parents calls you and and she's like I come and take your drugs how have you forgotten to take your job that was part of the stigma that began hitting me when I was very very young so I could come back and take drugs and you went back to play other children will tell me don't play with her because she has not taken her drugs her mom even beat you up for playing with her so to because she has not taken the so I that that was a really very long moment for me because I didn't know how to explain for them about sick or so and you were you were you were young they were young I was young they were young but they knew something was happening in me you knew something I also knew something but I couldn't explain to them indeed what was really happening yeah so the stigma began and that is when the stigma began yeah people not understanding what's going on exactly okay yeah I see so later later on in my when I was growing up when I joined high school there is this year that I didn't go to school at all in front to back in 2008 because I started another complication where I heard pain in my stomach for for me being a warrior and when I was young I wasn't I wasn't experiencing other pains like the headache as I told you earlier and the stomach pain I only had the crisis so in this pain of when I had stomach pains I really felt like I'm now becoming a real normal person like sick or so has gone now I'm back to a normal person with stomach yes stomach aches and all those so I felt a bit happy but I didn't know that that was the worst part that even I said the crisis is better than the stomach pain so from there I went to hospital second to hospital and I was misdiagonized because by that time is when I was told the doctors examined me and I was told that I heard a kidney failure and you went to the hospital because of stomach pains yes at which point you were quite happy thinking the sickle cell has gone gone and now you're normal I'm normal but to check out the stomach pains you got misdiagnosed yes and they told you that you that you had kidney failure and that I had kidney failure so I put from a very serious misdiagnosis exactly and now from that point so when I was misdiagonized I was told that I had kidney failure and that was really hard for for my parent to take it especially because now she was thinking of taking me can imagine of kidney failure yes the only option is to be taken to India and maybe kidney transplant needs to be done to you so now I was at that process and then that doctor told us she the doctor gave us drugs and the drugs were quite expensive I remember by that time they were six thousand and now when I went home I took the drugs and the pain wasn't the pain because it's a wrong drug yes for the wrong problem so the pain wasn't and this one I'm saying it for the first time actually I do not take the for the the dose of the drug I just took the drugs to the toilet because I told myself there is no way I'm going to be taking drugs that are increasing the pain so from there the doctor told us to go to see her after two weeks so when the two weeks are over we went back and this time my mom said let's change the doctor so we change the second opinion yes now because I was also relaxed and I was feeling like I should just die because I can't have sick or sale I have kidney failure guy was too much so now I went we went to see another doctor and we told the doctor what we had gone through the drug that we had been given and we are told that I had kidney failure and the doctor was so shocked so she asked she asked my mom you are told that your daughter has kidney failure and I say yes we were told that and that doctor was was very shocked and said no it can't be the case because if your daughter had kidney failure you could already have buried her so that made some hope on my mom and we really felt excited because now it was not kidney failure it was just a complication that it to sick or sale so the doctor gave us another prescription of drugs and when I went home it worked and from that time the previous doctor he told me that I had kidney failure because of the drugs that I take each and every day so the drugs were like I committed my system and they had affected my kidneys so from there I was shocked and that is when I felt that no I'm not going to do any more drugs in my life so I grew up yes before that because I feel like you're going somewhere very interesting no drugs anymore normal medication yes pause apple I shall come back to that one because I want that I want that I'm sure that will be an interesting one let's I want to come back and get a little bit of expertise upon what what you've what she's just been saying about getting first of all misdiagnosed how in the world okay are the symptoms that similar the problem is they do occur with similar to certain diseases that is one to with a sick or so I would say a lot of it is not if you do not come from if you are practicing in areas that sick or sick or cell is not that much prevalent you wouldn't see it that much so it would be difficult to actually pinpoint it then secondly comes in in terms of history medical history now when see when warriors are growing up they usually see a pellet fission okay all through being a child after around 14 or years of age okay once they cross that threshold their file their file is no longer patriarchy is taken to another department with that it actually gets with other so there's no no one following up on this patient from where the left top continuing so if she leaves that and remember she's no longer seeing her penetration she's going to see a new doctor the doctor doesn't really have the full history as to what has picked up has picked up you see where they left secondly he hasn't really gone through the journey with you or she so it would be very difficult to really pinpoint where the issue is that is one so sometimes it's not a matter of it's a matter of also the system that we have if it was possible that they could actually continue on a single channel they leave the penetration or a physician towards the same physicians they've had the same birth or within the same system whereby they continue on one journey it would be able to maintain the same the same history the file would go from patriarchy all the way up when it gets to adults it's a bit different because the it's a new reason this another there's no longer patriarchy so the history has to be collected again that's a new journey starting all of I see I see and you know sorry to bring it up but she did mention that she had lost two sisters because of this what are some of the things you can say as a medical practitioner what are some of the things our parents can look at in their children when they're still very young to sort of pinpoint or to see that hey I feel like this is leading to a problem yeah okay one of them would be jaundice that is the yellowing of this clear of the eye the eyeballs become yellowish okay that is very easy to see especially when that would mean this bilirubin in the system called jaundice yes jaundice the yellowing of the eyes or even the palms of the hands okay secondly there would be delayed milestones they are a bit more frailer than other children especially when they're still young as they are growing up they are younger they tend to have frequent infections a bit weaker they tend to be a bit irritable easily at some point they tend to get irritable over periods of time and that one would realize it's when they're actually going through the painful crisis but remember when they're also very young they're still protected by the fit olimoglobin but as it gets lower and as it gets depleted and then the sickle cell hemoglobin the HBS goes up they also now tend to now get more into crisis as the fit olimoglobin is reducing and the sickle cell hemoglobin is going up yeah so the crisis will increase some will actually start at around one year they start having crisis others will even start at three years like she said others would be diagnosed at two others even at four years yeah but remember all through their milestones you would have see you can actually see lower weight more frailer jaundice frequent infections in and out of hospital and you'd actually get to know there's something wrong and also getting to know where exactly you are the because sickle cell is more prevalent within the malaria belt regions that is around Nyanza I'm glad you've touched on that yeah that is around Nyanza and western and around the coast Nyanza western and around the coast that's where sickle cell is prevalent because of the mal it is more associated with malaria prone areas especially in Kenya although even in the world it's the same same as the Middle East Asia and parts of the Mediterranean yeah so it is still a disease it's a global disease yeah of course yes yes so but still with that we should remember with this age we actually having intermarriages yeah so right now sickle cell is also being found in areas that normally you wouldn't fall find sickle cell like even in the highlands but now it's getting to be seen even in those ages I see I see all right thank you for that I want us to touch on what solutions we have later on not later we don't have much time but lastly and so what I'm going to ask right now kindly don't spend too much time on it but maybe you can please tell me that interesting thing I was telling you to pause on the fact that you're not taking drugs you're not taking medication at all wow how do you and what are you doing in place of the medication and the drugs okay for me I first learned of my body and I understood that my body was a bit resistant for some drugs especially when I take them for so long like for instance if I was prescribed a drug today it could be it could be effective right now when I take it but I continue taking it over time my body adapts the drug and it no longer works so that is when I decided that I'm not going to use drugs and I'd rather use foods food yes so you're using foods to to combat yes wow what sorts of foods just in case someone is listening and they're like her okay I use foods that are rich in iron like the beetroot and the tererae pumpkin leaves and spinach mostly in my diet and also take I hydrate myself more frequently like water or any other fluids and then so I decided to study nutrition so that I could also manage my body you see the food that like food is the only medicine that I take so I as as much as I take the foods that are rich in iron I also accommodate them with their foods that help in the absorption of iron like after I've taken food that is rich in iron I take a fruit which is vitamin C to enhance the absorption of iron and I also reduce foods that hinder the absorption of iron in the body which include the tea and coffee which have the component turning which binds the iron and stops its absorption I see thank you so much for that's quite interesting there was a very interesting way you had advice you had of of of getting rid of not getting rid but making sure our parents can or do not get children who have this I liked that idea what idea was that would you share it with the public before we come up to yours is I could say that it is not easy to raise a child with a warrior because it is quite expensive and you really have to sacrifice for them so like my advice is for couples if you are falling in love for each other please go and do this screening test the secret cell screening test that you just get to know if you are carriers and if you buy by by chance you get fined so that you're both carriers please decide on whether you have you need to have children who are warriors so that you plan for them and you get prepared on how to raise them and get information about them because warriors are there to stay and they won't die at the age of six or 12 or there's they'll stay forever so please get prepared get information about secret cell go for counseling on how you take care of your children before you tie your knot before you tie your knot go and get tested you as a couple and see if you have if your carriers of this disease and then make a decision on whether or not you'd like to have a child because it's difficult to take care of that kindly can you can you give us shortly some of the things that you feel are solutions to this issue that we're having expensive medication and any other issues some of the solutions that I think we could actually have when it's cut in to secret cell one would be having clear policies that actually deal with secret cell because if we look at the burden of the disease even within our own economy it's very high wow it is very high imagine a mother who's the sole breadwinner or a mother and a father who's a sole breadwinner every week like she says she was in hospital it means at any given point one of them has to be in the hospital with her that is a deal of production lost now the amount of money spent on hospitalization it's a lot so if this money could have been placed in other activities it would be a level of production the economy her herself missing work not being able to get employed that denies the country workforce now the one solution we can have for this would be create policies that actually ensure that our warriors have more successful lives have a better chance of of helping of having a ripe life that would be full just like you and me right living a normal life yes among them would be actually I would beg I was not even big I would actually ask that the National Health Insurance Fund should be able to cater for them should be able to try and actually bring in a program that will actually cater for them okay because even if you look at some of the complications they have some of them are very expensive to take care of and if there's no cover and let me say most of the families affected by sick or I'm not from well-off families they come from economically downtrodden communities so if most of them are living below a dollar a day how will they be able to take care of a very good premium medication that's insurance and also taking that remember the other children in the house who need to feed who need to get clothes we need to go to school so it takes away from the whole family it's a cycle that has to be broken at a point and the first point would be one create an avenue of actually ensuring that the health care is well taken care of two would be subsidizing drugs if we say a drug like hydroxylase around 40 shillings a tablet so let's say she's supposed to use two that means an average of a hundred shillings on a single day which goes for 30 days that's a month so how do we do that it would be difficult for them to it's quite difficult yeah affordable medication and hir funding insurance yes and policies that actually create I would make it safer and easier for our years to live fuller lives that was wonderful I'm really glad that you guys came on set and I'd like to ask lastly and finally if there's anything you feel you would like to say about this particular topic please do feel free to say so before we shut the topic down is there one last thing my dear may be a piece of advice to people to stay strong continue being warriors perhaps I would like to advise people living with sequel cell that sequel cell is not a dead sentence like many doctors say that your child will not live at the age of six at the age of 18 and all those age limits all I would like to say is God is the giver and the taker of life and he is the one who has the final say so whether you have sequel cell or not you can you can die at any time so I would like to encourage people that to stay positive and understand their bodies know their limits and I love God and trust in God because God is the one who gave you sequel cell and he has a purpose for it okay yeah thank you so much a Santa Santa James or Chola and thank you so much Harriet Napori I hope that you guys have had a good time with our set I know I have and I know I've learned a lot thank you so much for sharing the information I know that there's a lot we have not covered but I'm sure we'll make time for that another time and again you guys remember it has been health on Monday we are here every single Monday to do this particular segment next week I want you guys to we're going to start this thing where we're doing a back-and-forth with our viewers and so please what should I review you next week today we're not quite able to do it but it's quite all right do still sending your thoughts in your views social media handles right down there Joy underscore Machache my name is Joy Machache thank you so much for tuning in coming up next is Valentine with the man talk