 Welcome back to The Eats Arcute. I hope you're having a good time and remember we are playing Kenyan music on Lee. Izo rikwa slingine tafazali jese njumbani. For now this is Kenyan music. I go by the name Eve Nyaga if you're just joining us. This is The Eats Arcute and like I always say we do not only entertain you up a single ma peke ake kujibamba. We also educate you and right about now our first guest is in studio. He goes by the name Benson and he'll be talking to us about rare diseases and more specifically about miastinia gravis or mg. He'll be telling us about his story, the treatment of the disease and more about the disease. Welcome to the studio. Good morning everyone. Good morning. How are you? Yes fine fine. Yes my name is Benson Karanja. I am here to represent layer diseases in Kenya. They are all over the world. Layer is many. There are many conditions such as miastinia gravis which I am representing. We have rupas. It's somehow common, more common. We also have a necropsy. We have fibromagia. All these are fibromagia is close to miastinia gravis. Okay so tell us about miast gravis. What is it? What it affects? mg is a muscular disorder. It is a muscle disease. Your muscles are the ones that you control your hands. The muscles that you can be able to control. Just get weak from nowhere. Just wake up in the morning when you are in a coma and you are in a coma. When you are in a coma you are in a coma. And it gets to a level that it gets to a serious level. So when it gets to that level that is an emergency. That is why it is called life threatening? Life threatening. And you see the problem with these layer conditions what was here lewi. So people believe these are cultural issues. We are Africans. What we are to say ma, nyu chawi. When we are to say ma, kusiju kuna traditions as jafanyu hivi hivi. That is the most interpretation of people. So you find in high school nanda pahali miamuka kwa assembly and people will think we were nashida. Ali log wa kwa. Ali log wa mibia tawasi miakun rago something. So at what point were you diagnosed? What will you diagnose? What point with mg? I work at Mombasa. I'm a Rectural Technical University of Mombasa. So I just went to work as normal. I came from Nairobi and went to Mombasa. So as I was going to work, kafika kazi ni kahanza machu haiaoni. Nikahanza kwa kupimo machu kuli kwa na nini. Are you only like mimefungika? What happens to the eyes? Machu wena guka. Ini ni the eyes inna funga hivi. Then the eyes nakataku coordinate and then you start seeing things to two. So nikahanza kwa na vitu mbilin bili. Kama niwa na kwa na nani kwa wili. So I have kufunga jichu moja kwa ni kwa na vizuni. So that is how it started. The problem with this layer diseases, Dr. Yahwasi elevi. So most of them, they don't understand. If you go to your nearest clinic, you are misdiagnosed. That started. So I went to the first one. Kwa misdiagnosiwa? U misdiagnosiwa kwa kwa mbianini ni? Kwanza wa rianza kusema atisijui ni mareria uchovu. Vitu ni ingi pa le Mombasa. And you see Mombasa, there is also many beliefs there. Yeah, about Uchawi. Uchawi. So naanza kwa mbio ni shidazizo, welevi. Luckily enough, I also went to Agakan again. They also misdiagnosed the same condition. So before you went to Agakan, once they misdiagnosed you kwa kwa mbiau kuna mareria na uchovu. Did the symptoms go on? They went. Zirienda sana. So from the eye. U mendi ya kwa matatu na anguka. Na yanda beach, ati u mendi ya kuli lakspale, na patatu, meshindo kwi nuka. So watu ana kwi nuwa. U nanda kupanda stairs, you lord. So people think that wiumtu amelewa asubuhi. Like I remember, with my daughter, ni kwa ni membeba. So ni membeba iwi. And you know, aka kwa uganjwa kana taka kwa. Kutembea, milkum na tembea? Tuna tembea kwa na kuchu kwa matatu. Aka kwa uganjwa kana penda pabri city sana. Kana penda attention. Kana penda attention. Zirienda tukotupare kwa crowd. Tukaterem kachini. Ni kwa anguka. Sasa unaansaku kushikiliya, haina uchungu. Lakin nuna, because of stigma nailewa, sasa watu ameshindo ni nuwa meja wa mekusaroundu panya. Ni kwa anzaku jifanya ni masupul. Na jiyo ata misi eleni. Oku unajua? Ata misi jiyu. Na jifanya atini masupul. Atu unaansaku sema. Na hi masupul kwa ni haina uchungu. Ya, jikwa egda tuwa kwa na masupul. It's painful. Lakin ni naka shikiliya iwi nojiwa si GLIwi. Ni mepewa dawa. Za 2 weeks zifanyi na anzaku kwa mbiwa ni nafs zifanyi. So finally ni liyanda pala, ni kali fadiwa to specialist. That is after agakan, right? Ina agakan. So, doktal mwenya ri niyona, aritwit kama ni naf kwa issues. Kuna shida za nafs ni kama zime kufa. Ya. So immediately ni katumu kwa specialist. Mi ni kakataa kuenda. Uwami ni. Uwa mini. Wana juhi uwa mini. Kwa na kuenda mti uwa mini ni nga juwa. You can't walk to the hospital to kila ni inga juwa. So mi atami na sema si mga juwa nini ni ni ni ni ni ni ni ni ni ni ni ni. So ni katoka tupale. Ni kaenda, mi spouse was coming back to Nairobi. So I was left atu mombasa. And the family is here. So mi mi, ni kakaachua. Nika, nika, nika. Napa na iu wong juwa? Wacha ni rode hospitali. So I went back. So this is after ume yambiwa ni. U Candy kwa specialist, Uka kata, you went back, uka gonjeka tema? Ikazi disasa. Na una bitum bilim bilim, nimi anguka, I cannot go to work. And you alone, this time? I'm alone. Now there was a time when I was at a loss, utacham langa, wu jafunga. Ya, just in case of anything. Because anything can happen. Tashindo kutokata kwa kitanda. So it has been a rough road. So when now I went and met the specialist, is when he said that I have to be done, now angali eni wu gonjuwagani. So the samples was taken, zika testi wu mojika tumo South Africa, and the others were done locally to rule out which condition could be. Lakri, or unlakri, my journey started. And they said the condition after waiting for them, although saizu wa rikuwa manyans, isha da wa nanza kidoga, kidoga treatment. So to na tumia da ina ito mestinon, that's the basic one. Because the problem, if niki inuwa, there is communication from the brain to the muscle. So it is, kichwa iki ambia ini inuwa imkono, saab nimi na control. Ile naf, ina shikanisha muscle, na ila kutokakwa kichwa, zina kata hako communicate. So wewa unata haku inuwa imkono, mekata inuwa kitu. So inuwa ni ni, it's ani uto imin, most easier conditions are outo iminuwa. Sasa kuna kwa mwili naanza ku break down, inuwa kemi ko eni ina communicate, na muscle. Sasa iki break uwa down, sasa wewa unajaribu, laki na kuna signal ina nda kwa masu, ina kata inuwa kazi. So iodawa, how does it work in your way? So iodawa sasa, ina fraud mwili, na iyo kemiko. So ata ile antibody zina, zina jalebu kufunja ile kemiko, sasa iko nyi ingi. So sasa ata iki, bunja ii kuna bakia ingi ne, masu sasa ina communicate. Io ingi ne, nimi na suppression. Ini ni li patiwa paren aspecialist. This imi na suppressant our predisoron, and most people with rare condition use this predisoron. Yes. So before we even get to the actual treatment that you're given, wom e sema for you, signs zeni u li patani, macho ina funga, una anguka, like you can't move your muscles. Kuna, kuna other signs and symptoms that zina za kuambia that kuna mg. Ya. Kuna you are breathing, kuna I have talked about. And again, kuna breathing, kuna Io double vision, kuna coordination ia macho, watwenki wana shida ia macho, ina kata ku coordinate, then kuongia, ina patiwa sauti ina kata ku taka, una patiwa kupumuwa ina rete shida. Sometimes, and other, like, like mi mi nikiwa university, I started here, I didn't know there was a condition in my colleagues. So it started way back in the university. Okay. No, like, when your lecturing, lecturing ama wukiwa shule badu. Nikiwa student, wukiwa student, but you didn't know. I didn't know. So you've heard it for that long. Ya. And my friends could rough at me, wana say ma uja mahua na yon to kila kati, awa elewi yon ni shida ni kona, atami si kuwa na JLW. Okay. So I came to realize, saa izisabu na findu, na yon kila kati, ina jua kumbia india, shida. Ya. Okay. So let's get to maybe the treatment. Tulkotu nongia mambu ya the treatment that's unape ome tuwambia moja yo ya kumgeza and to go to this. Nuguna tuwambia ingine about ya. Yo ingine na iminosapresant. This iminosapresant are many. Kuna predisron. We call it the deva tiktak. Why? It's a very small drug. A very white one. Kas more. Ya. Ina kakama ka tiktak. Kabaya. Kanakuja na side effect. Kamagani. Kunaana. Oh. Ya. And you know now people believe that to kunaana, yo increasing, yo ume kwa na tuwambia. Ya. So people now see ume ungeza ya wait. No, no, no. You have a moon face, very smooth skin, browning. Ya. And now people are na sema, bensona mihaza kupata maali because now he is... Ameka vizuri. Ameka vizuri, kazi me india vizuri. And now you are very good. Yes. Now what you get, and I got a crisis. Not once, not twice, not twice. Ya. This crisis means, and when the specialist saw me, he told me, you need a bed reserved for you. Why? What happened? That was a breaking moment. Ya. Sahabu wa na niyambia. In case of anything, part of breathing condition, unakuja, direct emergence, ume petitionwa, unapela kwaise. Ikifika teime niya, like you are unable to breathe, apono inakwa, life threatening. Life threatening. Yes. So yo niya isi, ume henda isi, umara tattoo. Okay. Moja, nika enda palemombasa, sikuwa na jailewa, lakin mi... ama the source of the problem. Nika pewa dawa. Uligno. Nika pewa dawa, nika kangalia, nika sema, uu doctor isi dawa na nipenizanini. Mimi simgunjwa, kuna shida nika naia, moru isi healthy. Nika pewa dawa nika. Nika kaka. Nika kaka kukunjwa. Ugunjwa ikarudin. Kwa ikirudin, narudin na mashetanizote. So ikarudin sasawa kwa wote. ICU, direct umombasa. I refuse to go to ICU. I said I can't go to ICU before my spouse is here. Akakuja. So na itaime niyo nga jia spousewa ko, it's bad. It is bad, I'm not able to breathe. It's not even able to breathe. It's not even able to breathe. It's not even able to breathe. I'm not able to breathe. But you go to the toilet, una leime wakut kwa muka. Kasa fi zuri para kuna belu, wutahivi na kuya una i nudiyu wa... Una pelekwa. It's that bad. You can't control anything for yourself. You are just there. You need support. Like today you say you see me, you see a different person. But when it happens, it's bad. You are affected by temperature. You are affected by emotions. Physical stresses. If you do a lot of manu, stress, work, work and do that, there is a lot of strain on those muscles in hands kuku Kutile kuwangu kasasa So you have to control your emotions Mitu ata kini kasilisha, tan kuwangali atu ni cheke Where is your ford kujipatia stress? So the first time you went to ICU, jule kata kuku niwa dao What about the second time? The second time is also affected by medications Kuna dao na hasta ili kukutumiya Antibiotic sana Kuna zingina zikuna wrist pale And now when you go to your home Apotukaribu niwa niwa, how I live with you Unarushiwa So I went here to Apatuna Robi kwa Sati in hospital, nikarushiwa dawa I came all the way from Mombasa very well It's village nili kwatu na homa Iho mahaishi, mwili mkwemi na suppressed So mwili hain na guvun So nikahenda tuwa pa, nikapewa dawa pa taun Nikamaeza, nikuwa ni mesama ni nunu over the counter Nikasama sita nunu What let me just walk to the hospital So that because my condition in Baya Is GMS, nikahenda di kapewa dawa Nili popewa kumesa Within two hours Daziness, kuanyumba na zungu ka hivinda konga wukutan Ikijalibu kusimama, nimi ambuka Everything went heavy Kutolewa kwa nyumba drtari wa rikuwa strike Nikale tuwa na my spousa raka raka Nikapele kwa pa admission kwa hospitalin Imejitri kwa naya alive They measured the SPO, twila oxygen Concentration kwa mwili Bakaw na masozangu wa zina nguvun Nikaya kwa tubes So by the time unapele kwa ICU a second time Hospitalin nyumba pele kwa are they understanding the disease Amma are you telling them that you have this particular disease I went there, they were the one who gave me the medication And the person who gave me hakuwa na elawa kondisyon Lakin nili muelezea sa anikam sistizia Ata unona ilibon, I have a ribbon here It's showing all the medications I should not take In case of emergency Or just in case of something Mi angukiapa, mituataeza kupata contact zeniata Waju asimu nizaya nda Lakin ni The ribbon nobody, it has no money So entachu anaya So at least unizapigia wa tu wongena So when I went there, nili muambia Na iwi na ini kondisyon nisi kama insistia Ya kasema haina shida meza Bing loya to my doctor nika meza Then ni karudisha the same hospital Ni riporudi waka elawa ndi wali Imejitri waka call another specialist Who has been seeing me In agakan Imejitri waka ni chukwa Nika eko intubation ICU Ata si kwa ni kwa nakakitu Ni kwa ready ni metumi ya more than 3 million It's a very expensive condition Ya, that is Mali penyata ni kwa tkatoende How expensive is it to treat MG? It's really expensive But God grace We make it Una nda pale Kuna da inaito IVIG Una eko kwa mwili Una da nili po eko Kwa inakost around Da wa peke ake 1.5 million How many doses do you need? The doses Zot is inakwa a while Kwa kwa kwa moja So you may need around 5 of them 250 to 300 So you need 5 of them In 5 days una eko So you ni kwa ni me shapewa mombasa Nili po nda ile first admission The insurance they learn away Because now this is chronic It's expensive Yua kaba has been busted So ni li ahead Pata wu me blow kava within a very short time Within one week in Meisha So I had to call friends, whatsapp, kutengeneza Tuka changa pale mombasa Tukpe se kaisha So ni me pata iapili The same year That was in February First diagnosis February 2016 April Admission ICU Now December another admission in Nairobi Nili po nda pale admission Sina kitu Shamba ni me uza Protizote zi me uza Tume changa akuna kitu ni me bakisha We had nothing in the family So ni nda pale Daktari kenyata wa me strike Siu zi pale kwa kule When I called the doctors there There is nothing we can do So the only now thing left is a It's a private Nili po nda pale kwa private Admission They want a deposit Sina So ni mimi I have nothing I can do My spouse is the one that is talking to them Nami atuna chochote Now what do we do with this person So they had to say admission first Let us talk about the other things About money, let us save life So immediately by God grace ni ka pale kwa ICU But the challenging thing na kwa tube Sometimes na amkaw na ziske And they get elitating It's a bad of experience So when I got there I got admitted 2.2 million You are asking about another How many days have you It was within 5 days IVIG The cover I don't have a cover We don't have anything The spouse is telling them Atuna chochote Nami we make fun Siu ni kwa hiyosiku Lete ni chakula Kamakuna chakula nzuri kuna yama Na itisha white meat Nini nda re ni kule Kwa ni nda fanya ni niki maliza My profession am also an engineer So I used to joke with my spouse Nami ni kifungiwa Siu ni kuna isi masini ni ingiapa Ta kwa na fanya kaziapa Nami ni tako ni nite beliati udari pata uku Then that is another admission So when it came to the day I am supposed to go home By God grace The hospital decided to pay for me All the amount Then I walked home easily Come the next year Another admission Now there is that timing But now in Kenyatta Because my doctor has insisted I have to go another surgery Ida ya You do an open chest They have to open kifungiwa But do you have a machine to breathe again? Ya, there was a problem It was a crisis there on the way And my doctor na sama You have to go your process and it will make to me So na fungiwa kifua And then there is kitu na ito Kwa na ukuwa mtoto Iko kubwa As you grow old Kwa na isha Sasa ya kubada na ishe Iko ilipopichiwa ni ni kakwa ni kubwa So ni kandani Ni katolewa Then you see that was another cost So that is a cost I am told I needed around Nikuwa na itisha 801 million Oredumia tya 2.2 True And then un itisha ingi na Tutatawa hape God sends Samaritans from Noko I went to Kenyata Met a doctor there I explained the case I was sent to Nairobi West They say they don't use an HIF So I went back to Kenyata I don't know anybody Kambia mimi Nmekuja Na niko naishida It's a crisis Then I need help Aka ni ambi ingi na kwa emergency Niko adimituwa In fact nikuwa ni mienda na bagi This is an emergency case We ingi apale Taka fani aile damektomi So that doctor took the case And pushed it all the way Pakani ka perekom Pakakwa diyata Then kafaniwa surgery Nika muka nika jipata na I see you again I see you now because after surgery Then HIF cleared Kenyata is a bit cheaper I have a clinic in Kenyata And I also have another clinic If you go to these private clinics They are also expensive You require like 3000 But if Kenyata you go there It's a bit cheaper Okay So let's talk about It's either today or tomorrow That you are celebrating rare disease Tomorrow It's tomorrow You're celebrating rare disease And you talked about the band on your hand So maybe What comes with you being part of An organization that understands Your condition Na inakusahidi apia kudil naio We really need support Because sometimes we have Challenges Challenges comes from everywhere We have friends who cannot understand us We have family members When you have LAWI conditionia You can try explaining to them 100 times You explain to an employer 100 times These conditions Some of them And most of them Are disaboring In nature Because when you cannot do your work Sometimes you need To be considered So as a group You need to agitate for these issues In government Let the government know That like MG is disaboring Fibromage is also disaboring And they give a special consideration to us So with this group The group members will understand each other Like today we have From around 10 to 12 We are live on Facebook YouTube We are celebrating The rare conditions Being a unique month So we choose February like a unique month For MG it is usually around Around June And you see these rare conditions Comes with Karo MG is green Lupasi is purple They have different karas So with this group You are facing the same problems So you will be able to encourage each other At your low time You will encourage each other Maybe you have excess of medication Because now you understand the person But when you walk alone You will get tired But when you are together Nani bado na strago So you are Not alone in this fight Physically, emotionally You have a support A support system, a support group Tukimalizia What would you tell People out there who have Children's, pauses, mothers, fathers Relative to that Have a similar disease Maybe they are just thinking It's a curse It's witchcraft Pengina na jifanya Specially kama yukitun What would you tell them What would you tell them What would you encounter The truth is They are chronic conditions They are wrong resting But there is hope Kwa will be there If we don't There is treatment Maybe there is no kwa But we hope one day we will get a kwa And even if there is no kwa With good management You can live well If when you see me today It's because of good management So there is hope Yes And they should not ignore Ya, you should not ignore Ya Okia na mtua kona shida Please try to get the treatment Don't assume it is a curse And it can happen to anybody Doesn't matter the age, the sex Anything Ya, so if Someone is suffering from the same Maybe they know about it Na hawa jaju about support group Awa jaju about The rare diseases group One is all kata hafi We are there in Facebook At Laya Condition Kenya They can also get We have societies Like for MG we have Maestiniya Gravy Society of Kenya We are quite a number We started very few I thought I was the only one in Kenya So I started by joining Lupas group I went to Laya Conditions But I came to realize We are also many So Laya are many So there is What's up What's up groups are there We have Facebook We also have them A website for rare condition Kenya if you just google that You can be able to get to the site Yes Ok, so thank you so much for coming We appreciate your time And the information that you have shared And we wish you a happy healthy life Yes Thank you Thank you for giving me this chance Ok, so we will release you But you can join the discussion That is going on You've said it On Facebook, right? On Facebook, YouTube And people can join as well So that They can listen in to the conversation Tengi na kuna mduna safa as well So go to Facebook You can join them I think they are going live From now up to 12 am Mutaskiza about rare diseases MG and you get to know More information other than What we have shared So we are taking a short Miskol break We'll be back