 Hello there and thank you for keeping us company, this is why in the morning my name is Ederova Hilewi. I know i had promised you that we will be talking about house of cards but for now let's talk about health. The interview is coming up in a few but for now let's just listen into the story of Elioz. Gรอ Eveנணגตึกหน้า MC Elioz, right? LGBTQ AMG He will tell us his story on how things changed on him, how his life turned around hisha Transport sticker hisha rani yohu Gultu souvenir φικabord nise hisha written VBS Orysz SVV So the condition is called a small vessel vasculitis. It's a condition that normally it attacks children and just children. I'm not sure about the age and everything because they just told me it's a condition that normally it's, you know, it's found in children unlike in adults. So actually I am the first adult patient that the doctors found with this condition and I will tell you that this condition is very rare and when it comes to an adult if it really gets an adult it becomes severe. So I just woke up one morning with a very sudden pain on my toes and I had to visit the local clinic where they looked at it and even without doing any tests they concluded that I'm having gout and gout attacks only the elderly. So I was in doubts and you know they diagnosed me, I went back home but with time as I continued staying at home it got worse and worse and worse. That is when it clicked in my mind that maybe something ain't right. Wait after you diagnosed the first time with gout as they said they gave you treatment? They did. Which never worked? Never worked. Okay. So it clicked in my mind that something is not right so I had to visit another hospital facility for second opinion and that is where now we went there and the first place I went I remember was an Nairobi East Hospital. They did the Doppler for the arteries and the veins, I went to the German Medical Center, they also did the Doppler for the veins and it was all negative. Until now one day I was in a very bad condition, the pain was really unbearable so I decided to look for, actually they advised me to look for a specialist. So I went to Agakan and found a specialist now a rheumatologist who was able now to tell us that this condition is small vessel vasculitis. So all the way nobody knew about it. For how long was this now? This took about three weeks because it all started on October 20th, that is when the whole nightmare started last year, October 28th. So within the margin of three weeks you were just up and down looking for okay what might this be because even the heel of the foot was somehow turning the collar was becoming dark kishpapish. So the rheumatologist told me that this condition, I'm suspecting this condition is small vessel vasculitis and that is when he was able to advise me on what to do. So he recommended me some drugs and told me to go back home and after a week, after using the medication that he gave me, I was supposed to see him after a week. Is it happening to one foot or both feet? Both, both of them, it happens to both of them. To all the toes? Ya, ya, ya, all the toes but it starts with a single one then it starts spreading bit by bit. Under the point you couldn't walk? Ya, I couldn't walk as usual. Okay. And then as time went by, it became worse, it became worse, it became worse. Even the one week that the rheumatologist gave me as I went back home, even after using his prescription it was becoming worse and worse and worse. So after one week I went back there, he looked at me and I'm telling you when he just looked at it like this, he just recommended that I be admitted at Kenyatta immediately because my legs were swollen and then the toes were, they call it gangrene, it changes color to dark because the blood supply has been cut short. So there is no supply of blood to your toes. So what they do, what he did he recommended me to be admitted and at Kenyatta now I went there and they did all the tests that they wanted. Actually I did very many tests and actually can I call it unfortunately or fortunately most of them came out negative. Of the tests they were running? Ya, they were coming out negative. Which were for what? They did, some of them, can I recall the names but I think they did anything that concerns the veins and the blood supply. Ya, these medical terms they are long and heavy. Exactly. So they did them, they did them, I did so many but all of them came out negative and still they held to the fact that this is small vessel vascularities. So they did, they gave me some injections, they did some therapy and everything. And I will tell you the bleeding was, the toes were now at this point the toes were bleeding excessively, the color had changed and it came to a point whereby these toes were even falling off when they did the dressing. So they did the dressing then one day when they were opening some of the toes, I remember one on the left had fallen off by itself. Ya, so they called in a wound specialist, in fact they didn't take me even to the ward because they were dead, like the toes were dead. Once it becomes gangrene, darkish, it dies and then it falls off or even if it is cut off I didn't even feel anything. So your nerves were dead from that point? Exactly, they were all dead to a certain point. The pain was excruciating, it was really bad. So the wound specialist told me that I don't even need to take you to the theater, we can just do it from here, trust me you won't feel anything. And at this point I remember I was insecure because you can imagine now like the doctor was saying you are going to lose some tissues. You know when the doctor says some tissues, it can't ring in your mind that you are going to lose a toe. So to me it sounded something small, comforting. Only to realize that I am losing my toes so you can imagine. So it came with the tools and everything. As you see them? Exactly. How did that click in your mind? It was shocking, it was so sudden, everything was so sudden. These things happened suddenly and you know something that is sudden, it's shocking, it's confusing, it just happens that one day you are okay, the next morning something happens, something that is so serious, something that is so tragic. And now we are speaking of a period of within a month. Within a month exactly. You are going to lose your toes within a month. Exactly. So he decided to, he observed the paranoia in me. So he wrapped me with a cloth, then told me to lie down. Then he took a needle, then started to prick on the toes, then he would ask me, can you feel it? Now the fear in me that if I don't tell the doctor, if I tell the doctor I'm not feeling it, he's going to amputate them. So at some point he would even not touch it, then ask me can you feel it? And then I'm like, yeah I can feel it. I was so paranoid, I could not believe everything happening around me. It was so shocking, I was kind of stressed, I even got to a point of depression. This was huge. Considering that I do events and everything, you can imagine what was going on in my heart. Exactly, my toes and everything. So he just amputated about three of them the first day. And I remember the moment the first toe fell off, I cried because there is that intimacy within yourself. Once you lose any part of your body, there is that intimacy. There is that feeling that you have lost a part of you. And it's really strong. And this is what we call the tissues now. Exactly. Now you can see it's your toe and it's a toe. You can imagine. So it happened, he got three of them out. I mean he amputated three of them the first day. And I remember he told me that I'm coming for these ones. Next time I come, I'm coming for these ones. So now be psychologically prepared. Be psychologically prepared. We had began the journey. Exactly. We announced that now. Oga, with your mind, how now you have now begun thinking of how now people see me? How will I be working into events now that you are an emcee? There's this kind of shoes you used to. How did that now go with your mentality? Or the mental health for that purpose? It really gave me some post-traumatic stress disorder. Because first and foremost, I mean I got traumatized. I got depressed. By imagining the fact that you don't know how your friends are going to behave towards you. You don't know how people are going to relate with you from then on. You don't know if you'll ever get back on that stage again to do what you used to do. And you know that is your life, that is your passion, that is where you are from. So to me that was like this is the end of everything. It's done. I don't know if I'll ever dance again. I don't know if I'll ever get on stage again. I don't know even how my clients if they hear of this how they are going to have that confidence in me to deliver. So a lot was running in my mind and it was really depressing. Who was your supposed system at this time? At this point I'd like to thank my family and even some of my friends who came up. I mean they showed up. But majorly my family even some people whom I didn't expect to be there for me even showed up. Once you are an emcee there are people who know you even whom you don't know. They have an idea about you. So people showed up. I'd like to thank people. I mean their support was overwhelming. So my mum was always around. My dad was always there. My cousins they were there all the time. My brother my elder brother he was really really supportive. And I had friends their friends who were there for me. Like if I start mentioning them some it's a long list. It's a long list. But to be specific I would like to thank the friend of mine called Anisa. They are all through even like yesterday I was with her. She has been there like she has been there. I can't say she has been there for me all the way. Salute. Salute. I'd also like to thank the Mugambis family. I'd like to thank Naj. The people were there for me and I would say that that was really good. Mraya, Timraya they know themselves. Did you undergo any cancelling at the point or knowing that you have a family that is there for you helped you come out of the situation? Ya we had what I would like to tell you is that if there is a project let me assure you this. If there is a project that the government is really helping people with is Kenyatta Hospital. Kenyatta Hospital is a place where I have seen people getting legit help. Because it doesn't matter where you come from even the poor like the poor the poor the poor people there. They get all the major treatments and the social workers are there to help them even with the financial burdens and everything. So at the Kenyatta Hospital there are specialists, there are counsellors who used to come in. They talked to patients, they talked to me and ya they were really a support system that I can say played a huge role in my recovery. Okay that's wonderful. Now the day for you to lose some other tissues came. So when the tissues were amputated the doctors at this point I would say like I think it's more of a miracle. And at this point I like to say sometimes it's good to believe in God it really works. And until you come to that point of desperation you never know what this statement, this statement it never makes sense. I used to hear people say believe in God, believe in God. But it hit me and I will tell you this the toes are amputated. Once the toes are amputated I am an adult. They can't grow. And in fact once they were amputated you know now the bone is exposed because there is that bone that is inside there. So the doctors were to do what we call, they were supposed to call the plastic surgeons, they were supposed to come and do what we call grafting. Where they get a tissue from some other part of your body then they come fix it there so that it looks presentable because it just can't stay like that. So before the plastic surgeons came in they took, I mean there was some delays because you know Kenyatta is, there is a lot of traffic in Kenyatta. And I was you know I was disturbed, I was confused, I was like why is this happening to me? Why are they taking time? Why is all this happening? But I didn't know that this delay the more they delayed the more something was happening because you know now it is you know. It's covered you can't you don't know what is happening until the doctor comes and say it. Exactly. So I mean a miracle was happening because the more they delayed the more something was happening which I am about to mention which doesn't happen. So once they came and you know opened the you know the wound now it was a shocking moment because they realized that the tissue was grafting, it was growing on itself, it doesn't happen. Wow. The doctors were shocked. That's a miracle. It's a miracle and everyone was in shock because this is something that doesn't happen this is you know in fact there's a team called the orthopedics. These are the surgeons who deal with the bones. The orthopedics was supposed to come in and you know give their opinion now because the bone was exposed. And you know once the bone is if the bone gets infected you don't heal that is I can say it's like death. So the orthopedics came in they looked at it and you know they said these bones are exposed. So what we're supposed to do we'll have to go a step further and amputate you further. So they were supposed to you know the toes are gone but they're not fully gone but they're supposed now for them they're supposed even to go further like half of the. Yeah just in case this disease had spread. Exactly. Okay. You can imagine. So I was at this point I was times 10 depressed. My family was confused. Everyone was in shock, confusion, stressed because now I'm already amputated. Here there are other people other specialists coming to say you're going to amputate you further. Further. You understand the situation. But now everything turned around to finding out now that some tissues have now grown. This was actually before the tissues now before the tissues now because this was at this was at that point where they did the amputation. Now before they cover it they called in the orthopedics to advise. To advise on what would be happening later. What would be happening later. Okay. So here the orthopedics you're going to cut you you're going to amputate you further. So for me I refused to sign the consent because you have to sign the consent that you agree. The surgeons will advise you on what is best for you but you make the choice. Okay. So I refused to sign the consent because I could not imagine myself like in that situation. The spirits who was leading you to believe in God. Exactly. Exactly. Those are the right words. My spirits refused. In fact my family people were confused. There are some people who agreed with the orthopedics team and some disagreed. At the end of the day everyone wants the best out of it. So for me I refused. I remember we had some up and downs with my dad calling me that night. He was like don't worry we are working on it. We are seeking even second opinions. Just don't panic. But I could just feel the panic at home what was going on. It was so conflicting. But I refused to sign. Myself I refused to sign the consent. And I called in the orthopedics again and I asked them to explain to me why they are going to do the amputation further. And I was not convinced with the reasons they gave me. And I can tell you this it was a very good decision because if I had decided, if I made up to follow what they told me. They would have acted like the following day. Exactly. It was supposed to be done immediately. It was an immediate effect. But later on we came to realize that. That is a decision that I could have regret for the rest of my life. Because the granulation now started like I had said earlier. It started. The doctor said we are not going to even call any other team for you. Just stay there. We observe you father because we have never seen this happening. So we are going to give you time. We will see how far it can go with the granulation. The growing of the tissues. Of course I will never get back by my whole toe. But at least there is something that was happening. So they decided to buy time with me. And now at this moment it became a moment of reflection. A moment of getting to see things happening. Kenyatta is either you come out of there well or you come out of there dead. In this word I saw people dying. People were dying like I even had a friend by my bedmate. You make friends with people. The next morning you wake up someone is dead by your side. At some point I was even the one calling the nurses and telling them is he still alive? Are we together? Ya. And then they realize he is gone. So at this point I did a lot of reflection. I got really close with my Bible and everything. And it was a turning point because I will tell you this. My dad used to tell us you should respect everyone around you no matter the status. And it really works because while there I got a young boy who was brought in by a good Samaritan. He had no family and he could not speak. And even the other patients used to look down on him. They despise him and everything. But once I got there I started to support the boy even telling the others this is a small boy. Just don't be too much on him. And this is the person, this is the boy because in Kenyatta your family is not allowed to stay with you overnight. So once the family is gone and I want to go to the washrooms and everything this is the boy who when they just woke up fetch the wheelchair for me put me on the wheelchair and took me to the washroom. Like someone whom you think is a nobody he was that person who was there for me in the most desperate moments in my life. We are all important. Exactly. And I remember one morning I woke up, pain woke me up. In fact pain used to wake me up. And I will tell you this. From October 20th 2019 to this moment as I speak with you I don't know what having a good sleep I can't remember the last time I had a good sleep even at the moment as I speak with you I don't get sleep. So pain used to wake me up so that day it was really bad. And the nurses won't be there all the time. You understand? The other people should be there too. Exactly. And I was in a position where I couldn't even walk I could not even put my... There is a point where I couldn't even put my my toes on the ground. Like it was so sensitive. It was super sensitive. And even when it comes to the moment where you want to go to the washroom you start having that fear because you know what it takes to get there. The pain. It was really bad. In fact I used to cry like a baby and you see a grown up crying out of pain. There is something. I used to feel it from the back of my head. It was really bad. And even the rheumatologists used to tell me this condition, I can't call it a disease it's a condition. This small vessel vasculitis it will frustrate you. It is a condition that frustrates people with pain. It will frustrate you with a lot and lots and lots of pain. And I'll tell you this. That day I woke up started shouting, calling names because once you are in pain you are traumatized. You don't even know what you are saying. I think the nurses were not anywhere around and this is the boy who like heard of me. He rushed out there. I went to look for people. I mean I'll tell you this. It is just healthy. It is just the best way for it to go. I mean it is just the best thing to do to respect everybody no matter the status. Because you'll never know who will be there for you when you are most desperate. That's true. Now when now the day that came the fund your toes are now doing even better. What happened next? When the fund the toes were doing better they decided to buy time with me because they wanted to see how far the granulation granulation now is now maybe for the sake of the viewers. Once you are amputated there is the bone that is inside there now it will be exposed because the whole of this tissue is cut off. So once this bone is exposed the bone now is exposed at the front the granulation is the post it comes up and starts covering the bone that is exposed. So they wanted to observe how far the granulation could go because they could not interfere with the natural response of the body. They had to allow it to observe it and allow it and see how far it could go. How long did that take? The granulation took I would say a month. Still in Kenyatta? Ya exactly. It came to a point where they had to send me home because they concluded that things were good. Mirako has happened. Now you are back home. Are you able to walk still? Not really. I am able to walk but not like I could not walk for long. I mean within the house Did you require any clenches to walk around or someone would hold you? Someone would hold me. Ya someone would hold me but at Kenyatta it was much worse because I could not even the only thing the only way I could mobility was within a wheelchair. Wow now you have gone home how did your people receive you how were they treating you? Vis-a-vis when you are in hospital now you are back home did you lose friends or you gained others? Before we get home let me thank there was some doctors these doctors Zubeda these doctor Mariam doctor Kiarie was really supportive I would like to thank them so the amount of love they showed me the support system and everything so here I am at home was really fun at this point I stayed in Kenyatta for one month and two weeks and you know we take a lot for granted I got out of hospital and I saw a car I was so excited to see a car because you imagine I was in the world for one month and two weeks I don't see anything outside you don't see the outside world exactly and the first thing I saw was a car outside they are packed I was so excited to see a car I was so excited to see the outside world every person minding their business doing their things I was so excited to take a lot for granted once you are just healthy you are good that is everything that you need you don't need anything else just need your health and I got out of hospital and I would say coming out of the hospital was a bit exciting it was exciting but it was also I was also anxious for people friends would behave towards me I didn't know if things would be back to normal but the friends that I knew the friends who I had they really supported me in fact they beat my expectation because some people wouldn't even come and ask me it was within my cocoon that I had my own thoughts about how people would perceive the whole situation but I was shocked it beat my expectation my friends were very supportive even those who are not able even some friends don't have resources to come because some of them are in the up country and everything but the calls the energy even it was very positive they even came to see me at home some could even travel all the way from Naro people come to see me I remember even people who came all the way from Mombasa they came to see me all the way that support in Nava and it's wonderful there's one thing as we wind up we are running out of time there's one thing we would like to understand how rare is this condition and what causes it small vessel vasculitis there is small vessel vasculitis medium and there is large medium and large is common in adults and everywhere it is there but for small vessel vasculitis it's quite rare because it is a condition that only attacks the kids but for adults it doesn't happen according to what the doctors told me this information that I got from the doctors in adults it is very rare and even the word that they put me in the word that they put me in at Kenyatta is a word that the patients who are there are patients who suffer from conditions that are very rare so this is a very rare condition in adults and even the rheumatologist himself told me that in my whole career 40 years career you are the first patient I am treating I mean I am seeing with small vessel vasculitis that is how rare it is and this is a condition this is a condition whereby the white blood cells they become excess in your body once they become excess they now confuse one part of your body to a disease they think it's an enemy they start fighting it an enemy within so it's the body fighting itself so it attacks that part of the body normally the extremes the toes and the fingers I was lucky enough it didn't get to my fingers it got in the toes so it attacks the extremes there is that what we call normally what it does it I mean the veins they swell up then they cut short the blood supply part of the body that's why it becomes dark and it dies it kills it completely exactly so once the vessels are swollen the blood supply is cut short and that is where now the toes that's the extremes now become gangrene and then they die from the doctors is this something that is preventable or if it happens you just wait for the treatment this condition is quite rare and even the doctors I could observe they were at some point they were becoming somehow confused I could tell they were confused but I think in children because it's a condition that attacks children in children in fact it even heals itself I can't call it a disease it's a condition in children it heals itself but once it attacks an adult it becomes it becomes tragic it happened to me I hate to say this but seems so you are an MC you are affected sometimes in October last year and maybe towards even December and these are the times these are the peak time in your career where we have events you have to MC and right now we are speaking of COVID-19 where we do not have so no events you are holding how has that affected your career as we finish just as you said you can just imagine I started my quarantine in October 20th unlike the rest of the people it affected me like it affected me on both ends like on all ends it hit me hard because December was you know that is the moment whereby infact when I was headed to the hospital when I got admitted some clients were calling me some clients don't know you are in bed some clients could call me while in hospital for events you can imagine how traumatizing it was some clients used to call me and I can assure you it affected it affected me like financially I was really hit hard psychologically I was hit hard it hit hard on all ends because you can imagine now you are healing and then COVID-19 is here and you know the doctor told me for this condition the infection itself leave along the toes the toes is just an effect for the infection to clear it will take about a year so you are still on meds so so what I can really tell you is that for someone like me you know COVID-19 once it hits the aged and anyone who is you know who's immunity is not stable it's tragic so for me have to be grounded completely alright I'm really hoping things will come out well very soon and you will go back to your business you have lost a lot of chum and as a young person I know you have been affected so I'm giving you 30 seconds speak to someone out there 30 seconds we finish so for the viewers what I like to say is that we should be very careful with the facilities once you are not well you should be very careful with the facilities that you visit because a good percentage of people are suffering or even dying because of what we call misdiagnosis like I said you had my story at the beginning I went to a clinic and they diagnosed me for gout and on the other hand I had small vasovascularity so I would like to tell the viewers you should be careful with the facilities that you go into and you should be careful to even question what is done to you so basically let's be vigilant with our health and also let's be a people, a nation that support we support one another let's be a support system that we watch each other and with that thank you so much Elias for coming and sharing your story I'm sure someone out there has learned something under your story is quite something exactly we wish you all the best Back home thank you so much for keeping us company we'll be taking a very short break then the interview of politics comes up next stay with us my name is Adereva Hilawe good morning