UNPLEASANT SITUATIONS CONTINUES...

Pia wakati nipo chuoni mwaka wa kwanza nilichaguliwa kuwa kiongozi wa darasa na mara nyingi nilikuwa nikienda ofisini kwa walimu kwa kuwa nilikuwa kiunganishi kati ya walimu na wanafunzi wa darasa langu na watu wa sickle cell tuna utambulisho wetu si mara zote lakini mara nyingi tunapokuwa katika crisis (kipindi cha mvunjiko wa seli) macho hubadilika rangi na kuwa ya njano tofauti na binadamu wa kawaida ambao macho yao huwa meupe, kwa kweli hilo nalo pia limekuwa ni changamoto kwangu maana limekua likizua maswali mengi sana kwa watu na limekuwa likininyima uhuru na kujiamini pindi niwapo mbele ya macho ya watu katika kipindi hicho na kwa kuwa wengi hawajui hujikuta wakinidhihaki mara kwa mara na pia limekuwa likinifanya niulizwe maswali mengi sana kila nilipokua niendapo ofisini kwa walimu lakini ilibidi nijifunze kuikubali hali lakini jingine ambalo nilikumbana nalo ni hasira, jambo ambalo nahisi limewahi kunigombanisha na watu wengi sana bila mwenyewe kujijua lakini kama ilitokea nikamkwaza mtu yeyote kwa ajili hiyo leo namuomba msamaha mbele ya watu wote mnaosoma makala hii sasa hivi. Hii hali hunikuta mara kwa mara nina hasira za haraka na huwa mtihani sana kutoweka na nilipojaribu kufuatilia nakumbuka siku moja wazazi wetu na sisi tulipokuwa tukipatiwa elimu juu ya watu wenye matatizo haya waliwahi kuambiwa wawe wavumilivu sana katika kutulea maana wagonjwa wa sickle cell huwa na hasira sana mara kwa mara hivyo la muhimu ilikuwa ni kutuelewa na kutukubali. Lakini pia namshukuru Mungu, kwani kwa sasa najitahidi sana kuidhibiti hali hii na nashukuru Mungu kuna mabadiliko makubwa si kama zamani.


Also when I was at the university first year I was selected as a class representative and I was going to lecturer’s offices constantly because I was a medium between teachers and students of my class and sickler people have their identity though its not all the time but most of the time when we are in crisis (when the cells breaks) our eyes become yellowish different from normal human beings who theirs eyes are always white, this has also been a challenge to me because it has been rising lots of questions to people and has been denying me the freedom and confidence whenever iam infront of people’s eyes, while others have been mocking me because they didn’t know what was wrong with me, it made me to be questioned alot whenever I went to the stuff offices but I had to learn to accept my condition. Also another challenge was anger, something that I think provoked me to fight with so many people without me noticing but if it has ever happened that i hurt anyone in one way or another, today I take this opportunity to ask for forgiveness infront of everyone who is reading this article right now. This situation happens to me constantly I usually get angry fast and it takes time to go away, so I decided to do some follow ups why it is like that and I remembered one day when we were at the clinic getting some training about people with sickle cell our parents and us were once told that they should be very patients living with us because we have tempers so its important to accept and understands us. But I also thank god, because now im really doing my best to prevent that condition and thank god I can see some improvement comparison with the beginning.

UNPLEASANT SITUATIONS

Kuna siku pia mwaka jana nilikutana na unpleasant situation ambayo kwa kweli iliniumiza baada ya msichana mmoja kuniinsult kwa message only because nina sickle cell na mazungumzo yalikuwa hivi:

Me: achana na mm wewe
X: Co niachane n ww mgonjwa wa sikocell! Sema ukweli yellow skin!
Me: ha ha ha una jengine au hilo 2? Alhamdulilah 4 who n watever iam kazi kwako
Iam beautiful no matter wat u say n u cnt put me down darling
X: I swear i'l!!Do u thnk umefika?
Me: well m waitin 4 dat lets c
X: Huna lolote mfu ww!
Me: Anything else
X: Mpe hai!

Hebu nambie kama ndo ingekuwa ni wewe what would you feel? Na ungechukua hatua gani? Sasa hayo ndo mambo ambayo mara kwa mara nakumbana nayo katika maisha yangu na inauma inauma kwa kweli lakini sina cha kufanya zaidi ya kumshukuru Mungu.



There is day last year that I will never forget in my life, that day I met with unpleasant situation that hurt me so much after a certain girl insulted by messages on facebook because I have sickle cell and the conversation was as follows:
Me: leave me alone
X: I wont leave you alone sickler! Speak the truth yellow skin!
Me: hahaha do you have anythingelse or only that? Thank god 4 who and whatever iam, it’s up to you
Iam beautiful no matter what you say and you can’t put me down darling
X: I swear I’ll!! Do you think you have succeded?
Me: well iam waiting for that lets see
X: you are a dead person, you have nothing
Me: anythingelse?
X: say hi!
Now tell me if it was you, how would you feel? Or better yet what decision would you take? Now that’s the things I have been encounter with constantly in my life and it hurts, it hurts very bad but I have nothingelse to do than to thank God.

THE UNIVERSITY OF DODOMA

Hatimaye majibu yalitoka nikachaguliwa Chuo Kikuu cha Dodoma hivyo niliondoka na kwenda kuanza masomo yangu, na kama ilivyo ada dawa hazikukosekana kwenye mizigo yangu nikawa nimeanza maisha mapya na watu wapya tena, wanaohitaji ufafanuzi lakini katu sikuthubutu kumwambia yeyote juu ya hali yangu ilikuwa bahati nzuri nilikaa karibu na watu ambao nimesoma nao hviyo waliijua hali yangu na walinisaidia kila mara nilipohitaji msaada wa kiafya hususan nilipoumwa, nilipokuwa pale chuoni kuna watu ambao kamwe sitowasahau katika maisha yangu kwa muhanga waliojitoa juu yangu kuna kipindi niliumwa hadi kushindwa hata kwenda chooni lakini hawakusita kunibeba kunipeleka, kufua na kudeki matapishi yangu na hata ilipobidi kunifulia ngua za ndani I will always be grateful to them ZULFA, MASTURA, DEBORA, RAFIKI, FINA na HAFSA ( I LOVE YOU GUYS n u will always be in my heart) na VERDIANA pia kuna walokuwa wakinibeba mara kwa mara nilipokuwa naumwa na hakukuwa na ambulance karibu HUMPHREY na rafiki zako I salute you popote mlipo. Lakini pamoja na yote kuna watu mchango wao sitausahau nilipokuwa nasoma kwa kunipa moyo FINA najua hujui lakini kuna kitu kimoja cha muhimu sana ulichonifunza katika maisha yangu and that is to be strong always and I respect you for that SOZIGWA bila kusahau umenipa moyo sana na umenifunza mengi nashukuru sana kwa hilo.

At last the results were out and I was selected to join university of Dodoma for my bachelor degree so I left to begin my studies, and as always medicine didnt miss in my luggages, I started a new life with new people once again, who needed to be told of my condition but I didn’t dare tell anyone about that but I was luck I stayed close rooms with people who I studied with so they were aware and they helped me constantly when I needed their help especially when I was sick, when I was there, there are some people that I will never forget in my life for the readiness they had in helping me, there are times that I was very sick that I couldn’t do anything, I couldn’t evn stand and go to toilet but they didn’t hasitate to carry me, to wash my clothes and mop the dirt when I vomited and even wash my underwears when it was necessary. I will always be grateful to them ZULFA, MASTURA, DEBORA, RAFIKI, FINA, HAFSA (I LOVE YOU GUYS and u will alywas be in my heart) and VERDIANA. Also I wont forget those who were carring me to the hospital when the ambulance was far HUMPHREY and your friends I salute you guys. More over there people that I will never forget their moral support and give me hope FINA I know you are not aware of this because I have never told you about this, there is one important thing that u taught me and that is to be strong always and I respect you for that without forgetting someone goes by the name SOZIGWA you gave me lots of strength and hope, u also taught me a lot thans a lot for that.

AFTER I COMPLETED FORM SIX

Wakati nilipomaliza kidato cha sita nilirudi nyumbani kama ilivyo ada na kama ilivyo kawaida huwa tunakaa muda mrefu tukisubiri matokeo hivyo nilikuwa tu nyumbani, na kama ilivyo kwa binadamu hasa vijana, msichana kama mimi ambaye kwa wakati huo nilikuwa binti mkubwa mapenzi hutokea wakati wowote pasi kutarajia. Basi kuna kijana pale mtaani akatokea kunipenda sana lakini baada ya kufahamiana kwa muda nilimwambia kuhusu hali yangu ya kiafya na akakubaliana nayo, baada ya muda kuna mtu pale mtaani alienda ofisini kwao na kumwambia mama yake kuwa “Namuona kijana wako akimfuata sana binti mmoja pale mtaani nikaona niwatahadhirishe kuwa Yule binti sio mzima ni mgonjwa na kifafa” akaenda na vielelezo ambavyo kwa kweli sijui alivitoa wapi na mpaka leo sijui ni nani kwa kuwa Yule kaka hakupenda kunitajia huyo mtu ila alinambia tu khadija kuwa makini na majirani sio wote wazuri wengine hawakutakii mema basi tangu hapo familia ya Yule kijana ikatokea kunichukia sanaaaa huku wakimshawishi kuachana na mimi japo aliwaelewesha kuwa siumwi kifafa na nilishamwambia kuhusu hali yangu na yeye alikubaliana nalo lakini walisisitiza kuwa hata kama si kifafa lakini hapaswi kuwa na binti mgonjwa kama mimi lakini namshukuru Mungu Yule kijana alikuwa muelewa aliendelea na msimamo wake na hata nilipokuwa naumwa alikuja hadi hospitali kuniona kuhakikisha nakula na kuhakikisha Napata matunda, maziwa na lishe nzuri. Alipata matatizo mengi sana kutoka katika familia yake kwa ajili yangu na mwisho wa siku maneno ya watu yakafanikiwa kututenganisha lakini namkumbuka hadi leo na katu sitomsahau kwa kuwa sijawahi kupendwa kama alivyokuwa akinipenda Yule kijana, nilichojifunza kutokana na hili ni kuwa unyanyapaa katika jamii kwa watu wenye hali kama yangu ya kiafya upo tena sana tu hatukubaliki katika jamii tunatengwa kitu ambacho binafsi kiliniumiza sana nikatamani nibadili nilivyo niwe mtu mwengine lakini ni jambo ambalo halikuwezekana na halitawezekana.


When I completed form six I came back home as we all do and as we all know that we spent much time waiting for the results so I stayed at home, and as it is to human beings especially youth, a girl like me who at that time was a teeneger love happens anytime without expecting. There was a boy in our street who fell very much in love with me but after some time of knowing each other I told him about my health condition and he accepted it, after sometime since I told him about my condition someone from our street went to his parents and told them that their son is seeing me and that he/she wanted to alert them because iam not well im suffering from fits and that person went with documents evidence that I didnt know where he/she got it and I also don’t know who it was because when that guy told me he didnt want to say who was it , all he said was I should be careful because not everyone loves me others dnt wish me well so since then that boy’s family happen to hate me so much and convinced him to forget about me because they don’t need me in their family though he explained to them that im not suffering from that disease and that he knows because I have told him about my condition and he is ready to be with me but they insist that even if it is not fits, its not proper for him to be with sick girl like me but I thank god the guy was very understanding and very stable with his decisions and when I was sick he was always at the hospital making sure that I eat and get fruits, milk and balanced diet. He went through many problems from his family because of me and at the end of the day rumors and gossips succeeds to separate us but I still remember him until today and I will never forget him because I have never been loved the way he did, what I learnt from this event is that there is isolation of people like me in our society especially African societies, this awareness hurt me so much that I wished I could change the way I was and became another person but its something that was not possible and will never be.

LIFE AT MORO SEC

Ilifika wakati mwengine ilimbidi mama kupanda gari hadi Mororgoro kunichukua nyumbani kwa mmoja wa kaka zangu na kuniuguza hadi nipatapo nafuu ndo huondoka na kurejea ofisini hayo ndo maisha yangu nillipokuwa moro sec. wakati nikiwa kidato cha sita nilianza kuhisi hali tofauti katika mwili wangu hasa ilipofika usiku wa manane, nilihisi tumbo likiniwaka moto mara kwa mara niliamka na kuhangaika kutafuta chochote kitakachonipa nafuu baadae hali ilizidi ikanibidi nirudi nyumbani na baada ya vipimo nikagundulika kuwa na vidonda vya tumbo tatizo jengine likanipata. Kwa kweli hadi leo bado sijang’amua hali iliyosababisha kupata tatizo hilo lakini hadi sasa ninalo na huwa ninateseka mara mbili pale ninapoumwa.
Jambo jingine lilokuwa likinitesa nilipokuwa Moro sec ni mwalimu wangu wa darasa, mwalimu Yule alikuwa akinichukia na chuki yake ilidhihirika wazi machoni bila kificho na kwa kweli hadi leo sikujua sababu labda kwasababu nilikuwa mgonjwa na hakuweza kunipiga kila alipoamua kuchapa darasa zima, kwa maana alikuwa na tabia ya kuchapa darasa zima akikuta makelele darasani na kila mara alikuwa akiongea maneno ya kejeli kabla ya kuanza kuchapa utamsikia “Mi nakung’uta wote sijali nani ana mashetani wala nani ana nini, we kama una mashetani pandisha” kisha darasa zima huanguka kicheko pia kila alipokuwa akifikia nilipokuwa nakaa mimi kwa kuwa karibu darasa zima walikuwa wananijua naumwa hawakusita kusema “Mwalimu huyo hachapwi anaumwa” na yeye hujibu anaumwa nini? Nyie ndo madaktari au mashabiki wake mi nampiga na vitu vya namna hiyo. Darasani tulikuwa wagonjwa wawili Mimi na kuna msichana mwengine ambaye alikuwa akianguka mara kwa mara akipigwa, kwa kweli mwalimu huyu alinipa wakati mgumu sana mpaka namaliza moro sec lakini namshukuru Mungu nilimaliza kwa amani.

It reached a time that my mother had to come to morogoro and take me to one of my brothers house and take care of me until I get better then she leave and go back to office, that’s how my life was when I was in moro sec. when I entered form six I started feeling something different in my body especially in midnight, I felt something like fire in my stomach, I would woke up and found anything that would make me feel better then later the condition got worse so I had to go back home and after some tastes It was found that I develop some ulcers in my stomach, another problem was born. Until today I haven’t been able to know what caused it but I have it until now and when I get sick I suffer twice.
Another thing that made me suffer when I was at Moro sec was my class teacher, oh my! The teacher hated me so much and she couldn’t even hide it, it was very clear in her eyes, until today I don’t know why she hated me that way was it because I was sick and she couldn’t beat me whenever she decide to beat the whole class, because she had the habit of beating the whole class whenever she find people making noise in the class without asking who was making noise and who wasn’t and everytime she does that she was speaking insults before doing that you will hear her “I beat all I don’t care who has evil spirits or who has what, if you have spirits then let them show theirselves” then the whole class would start laughing, also when she was getting near where I was sitting because almost the whole class knew that I was sick so they always said “teacher she is sick you cant beat her” the she would reply “what is she suffering from? Are you the doctors or just her fans, iam going to beat her and other things like that. In our class we were two sufferers, I and another girl who was falling constantly whe she was beaten, frankly she gave me a hard time studying there until I completed but I thank god that I completed peacefully.

sorry kwa kuchukua muda mrefu kupost muendelezo wa story lets continue

Kwa siku za mwanzo maisha yalikuwa mepesi na ya kawaida lakini hali ilikuwa tete pale nilipoanza kuumwa na hii ilitokana na kupata malaria mara kwa mara ugonjwa ambao ni adui yangu mkubwa na ndo ugonjwa ambao huamsha yote yaliyolala. Kwa kweli nilipoumwa nilipata tabu sanaaaa kwa kuwa kwanza ilikuwa ni lazima nilazwe hospitali ya mkoa kwani nilikuwa ni mwanafunzi wa shule ya serikali, na kama tujuavyo hospitali nyingi za serikali huwa na huduma mbovu na duni na kutokana na hali yangu nilihitaji uangalizi wa ziada hapo ndipo nilipokuwa nikikumbuka wazazi, nikatamani ningekuwepo nyumbani au hata mama yangu angekuwa karibu yangu, nilikatwazwa kulala na mtu yeyote marafiki zangu walikuwa wakifukuzwa na hivyo kulazimika kulala peke yangu, na nilipokuwa nikizidiwa na kulalama kwa maumivu usiku hakuna aliyekuwa akijali wala kushtuka sana sana labda unakuwa umewapatia la kuongea wakati wa kukabidhiana zamu utawasikia “Huyu ana ni sickler vikimzidia utamuona anajipinduapindua tu kitandani, kisha wote wanaangua vicheko” hizo ndo huduma za hospitali zetu za serikali. Vyoo pia vilikuwa vichafu mno muda mwengine hata maji hakuna hivyo kuoga ilikuwa ndoto za abunuasi, pili nilipokuwa moro sec mara nyingi nilipokuwa nikizidiwa usiku kama kawaida ilinibidi kuvumilia hadi asubuhi na pengine bado inapofika asubuhi matron akifuatwa atajibu anasali tumsubiri hadi amalize kusali ikiwa mimi naumia mana maumivu ya sickle cell huwa makali sana kiasi cha muda mwengine kupatwa na ganzi ya viungo hasa meno pamoja na hayo yote nawashukuru sana watu ambao walikuwa nami siku zote za kuumwa kwangu nitawashukuru hadi pumzi yangu ya mwisho MWANAHAWA, MELANIA, KALISTA, JULIE, SUBIRA na FAITH, FINA, EVE, na yeyote ambaye nimemsahau lakini unajua kwa njia moja ama nyingine ulinisaidia natumia fursa hii kukushukuru for everything.

In early days life was very simple and normal but things got complicated when I started falling sick and this was because of getting malaria every now and then, the disease which is my greatest enemy and which cause worsening of my condition. Honestly when I fall sick I was in bad shape because first I had to be admitted in government hospital since I was a government student, and as we all know most of government hospitals have poor services and because of my condition I needed an extra care and that’s what reminded me of my parents, and wish I was home or even my mother would have been there with me, I wasn’t allowed to sleep with anyone and when my condition get worse because of the pain at night nobody cared, you will just give things to say when they exchange the turns at morning “she is sickler when the pain become unbearable you will see her twisting herself from one side of the bed to another, and they all laugh” those are the services of our government hospitals. Toilets were also too dirty and without water so to have bath was not possible sometimes, second when I was in mororgoro secondary and my condition got worse at night I had to be patient until morning and even so when the morning come and when they go to tell matron, she will say that she is praying so we have to wait until she finishes while I was hurting because the sickle cell pain is very painfull and hard to handle and sometimes leading to numbness of muscles and teeth but above all that I would like to thank some people who were always with me when I was sick always supporting me as follows; MWANAHAWA, MELANIA, KALISTA, JULIE, SUBIRA, FAITH, FINA, EVE and whoMever I ddnt mention but you know you helped me in one way or another I take this opportunity to thank you for everything.

TUENDELEE...

Ikabaki tu kusubiri uchaguzi wa shule utangazwe na kama nilivyodhamiria nilichaguliwa kujiunga na kidato cha tano katika shule ya sekondari Morogoro maarufu kama Moro sec mjini Morogoro. Kwangu binafsi nilifurahi kwa kuwa nilikuwa nimetimiza lengo langu lakini kwa wazazi wangu ilikuwa ni wasiwasi tele na mama alijaribu kunishawishi ili nikubali kufanya mpango wa kuhama shule lakini alikumbana na maswali ambayo hata yeye yalimfanya afikiri mara mbili na kwa shingo upande alikubaliana na maamuzi yangu nilimuuliza “Mama leo mko hai sawa, lakini kumbuka sisi ni wanadamu kuna leo na kesho, itakuaje mtakapofunga macho? Nitaishi na nani? Itanibidi nijifunze kuishi mwenyewe.”


So I stayed at home while waiting for the school selection to be announced and as I intended I was selected to join form 5 at morogoro secondary school well known as Moro sec. at morogoro region. I was more than happy because I fullfiled my goal but to my parents side it was fear and mom tried to convice me so that I can accept to shift to other day school but she met with questions that made her think twice and she accepted my decisions without full consent, I asked her “mom today you are alive, but remember we are human beings no one knows tomorrow, what will happen if you pass away? Who will I live with? I have to learn to live by my own and to take care of myself.”

CONTINUES...

Na baada ya kuwekwa mapumziko na kupatiwa matibabu na vipimo ambapo niligundulika kuwa na wadudu 6 wa malaria pia sikuwa na maji ya kutosha mwilini. Madakatari walimshauri mama anipeleke nyumbani kutokana na ukweli kuwa hali yangu haikuwa vyema kuendelea kukaa pale ningeweza kuzoa maradhi mengine. Kwa kweli nilikuwa nikipenda zaidi kuwa mtu wa kawaida na kwa kuwa niliujua ukweli kuwa naumwa nilijitahidi kujiepusha na makosa ya hapa na pale shuleni ili niepukane na adhabu na nashukuru Mungu kwa namna moja ama nyingine nilifanikiwa.

Namshukuru Mungu nilifanikiwa kumaliza kwa amani hadi kidato cha nne na matokeo yalipotoka yalikuwa mazuri na hivyo nilijiandaa kwa hatua nyingine as they always say “one step at a time” lakini katika hatua hii akili yangu ilikuwa na mpango mwengine kabisa ambao hata wazazi wangu hawakuwa wakifahamu nilikuwa nimedhamiria kubadili mazingira kabisa kwa kutaka kusoma boarding mkoa mwengine na hata katika uchaguzi wa shule nilioufanya sikuchagua hata shule moja ya jijini Dar es salaam, nilichokuwa nakiwaza na kujiuliza ni kuwa “Nitakaa na wazazi hadi lini kwanini nisijaribu uzoefu mwengine wa maisha ya peke yangu, maisha mbali na wazazi haya ni maisha kuna leo na kesho sitokaa na wazazi siku zote naweza kuolewa siku moja na ukiacha kuolewa itakuaje kama kesho wakifumba macho nitakua mgeni wa nani? Nani atakubali kuishi na mimi katika hali hii? Inanilazimu kufanya hivi, ni lazima nijifunze kujihudumia mwenyewe mtiririko wa mawazo uliendelea kupita kichwani mwangu”


And after getting there I was admitted for a short time then after some test and drip, whereby it was discovered that I had 6 viruses of malaria and my body lacked water. Doctors’ advice my mom to take me home because according to my condition it wasn’t proper to continue staying there I could get others diseases. Honestly I really liked being a normal person and because I knew the truth that I was sick I tried my best avoiding mistakes at school in order to avoid punishment and I thank God that in one way or another I managed to do so.

Thank god I succeed to complete my O level studies without problems and the results came out good so I prepared myself to move into another step as they always say “one step at a time” but ib this step my mind was having totally another plan that even my parents didn’t knew about, I intended to change the environment by wanting to study boarding school in another region and even in the selection of schools I didn’t chose even one school in Dar es salaam, what I was asking myself and thinking is “until when will I live with my parents, why dnt I try another experience of living alone, life away from my parents, this is life you never know about tomorrow I might get married one day or they may die one day I wont be with them always. So what if they die one day? Who will accept to live with me in this condition? I must do this; I must learn how to take care of myself, that the way I was thinking in my mind”

CONTINUES

siku hiyo nilitoka nyumbani nikiwa sijisikii vizuri na mama akanambia nisiende shule kama najisikia vibaya lakini sikusikia nikang'ang'ania kwenda. nimefika shule vizuri tukanywa chai vizuri, ukafika wakati wa kufanya usafi hapo ndipo nilipoanza kutapika, nikaamua kurejea nyumbani nikisindikizwa na rafiki yangu lakini sikufanikiwa hata kufika getini niliishiwa nguvu na nikawa naona giza kisha nikapoteza fahamu the next thing nilishtuka niko mapumziko katika dispensary ya shule na classmates zangu wamenizunguka wakinipa pole. Wakati huo mama alikuwa njiani akielekea ofisini alipopigiwa simu alishuka haraka sana na kuchukua taxi kuja shule huku macho yamemjaa machozi akijua sasa ananipoteza, nilikimbizwa muhimbili kwa kuwa ndo ilikuwa hospitali ya karibu.............



That day i left home but i was not feeling well n mom told me to rest and not to go to school if i wwasnt feeling well but i dnt listen and i was so stubborn so i went. i reached home safely and drink tea, and i was the time to do cleanness thats when i started vomiting, and so i decided to go back home accompanied by my friend but i ddnt even reach the get i felt weak and couldnt see anymore then i fainted and the next thing that i noticed was i was in a school dispensary surrounded by my classmates who were feeling sorry. By that time my mother was on her way to office then she received a call and as soon as she did she dropped off the bus and grab a cab and rush to school , her eyes were filled with tears when she gets there knowing that she lost me for good. after she arrived i was rushed to muhimbili hospital because it was the nearest hospital..........

KILICHOTOKEA KWA OFISI YA HEADMISTRESS

INAENDELEA…..
Jawabu nililojibiwa kwa kweli sitokaa nisahahu “we si unaunwa? Kwanini usisome masomo ya kawaida, sayansi huwezi kemikali zitakuathiri “niliganda kwanza moyoni nikajiuliza ‘who are you to tell me what I can do n what I cannot do? Jambo ambalo pia nalichukia kuambiwa kuwa wewe huwezi kufanya kitu hiki kwasababu unaumwa, na kwa kweli nilijiuliza sana kwasababu nimeshawahi kutibiwa na daktari ambaye ana sickle cell je Yule alisomaje?
Niliumia sana sana kupita sana nikafikia hadi uamuzi wa kuhama shule lakini baadae nikasema hii ndo njia ambayo Mungu amaenichagulia siwezi jua kwanini nimepelekwa huku Mungu ana makusudi na mimi wacha nisome. Nikaendelea na masomo yangu lakini pia nilikuwa na tabia ya ubishi kwani hata nilipokuwa naumwa bado nililazimisha kwenda shule nakumbuka siku moja hadi nilipoteza fahamu shuleni…
ILIKUAJE HADI NIKAPOTEZA FAHAMU? KWANINI NILIPOTEZA FAHAMU NA NINI KILITOKEA BAADA YA KUPOTEZA FAHAMU? UNGANA NAMI KESHO UPATE MAJIBU YA MASWALI YAKO…….


CONTINUES………..
The reply I got to be frank I will never forget it “you are sick? Why don’t you take other subjects, you can’t handle science subjects, chemicals in the laboratory will affect you” honestly I was surprised and then I asked myself “who is she to tell me what I can do and what I cant do? I actually hate this someone to tell me I can’t do something because iam sick, and infact I asked myself lots of questions because I was once treated with a doctor eho is sickler, so did manage to study ddnt the chemicals affect him?
I was really hurt and I decided to migrate to another school but later I said to myself this is the way that god chose for me, I don’t know why did god chose me to go this way. God has plans for me let me study this. I continued with my studies, but I had a bad behavior of content because even when I was sick I forced to go school I remember one day I fainted when I was at school…
DO YOU WANNA KNOW HOW DID IT HAPPEN? WHY DID I FAINT AND WHAT HAPPENED? JOIN ME TOMMORROW………

THE STORY CONTINUES
Baada ya kuwa na ufahamu kuhusiana na hali yangu niliamua kuwa nataka nisome ili nije kuwa daktari ama nijitibu mwenyewe au nisaidie wenye matatizo kama yangu, na kama wengi wetu tujuavyo masomo ya sayansi huwa yanahitaji umakini mkubwa lakini kwa kuwa nilikuwa nikiumwa mara kwa mara na kulazwa mara nyingi nilijikuta nikiachwa nyuma kimasomo lakini kilichokuwa kikinisaidia ni kwa kuwa mungu alinipa akili za kuzaliwa zilizokuwa zikinisaidia katika masomo yangu na kunifanya nifanye vizuri mara kwa mara lakini hali ilibadilika nilipomaliza kidato cha pili na kusubiri matokeo, matokeo yalitoka na kwa bahati mbaya sikuwa nimefanya vizuri sana kwenye masomo ya sayansi hali iliyosababisha kuyeyusha ndoto zangu za kuwa daktari kwa maana ndo nilipeana mkono wa kwaheri na masomo ya sayansi, siku ile nililia sana kuona ndoto zangu zikiyeyuka mbele ya macho yangu pasi na kuwa na uwezo wa kufanya chochote ili kuzinusuru nililia hadi nafika nyumbani na nilipofika tu nyumbani nilianza kuumwa, nilikata mwezi mzima nikiwa kitandani hali ilikuwa mbaya sana maumivu yalikuwa makali sana, lakini nilipopata tu nafuu kitu cha kwanza ilikuwa ni kukimbilia ofisini kwa mwalimu mkuu kuomba huku nikilia wanifikirie mara mbili kwani sikuwa tayari kuona ndoto zangu zikiyeyuka……………….

JE, UNATAKA KUJUA KILICHOTOKEA NDANI YA OFISI YA MWALIMU MKUU?
UNATAKA KUJUA JIBU ALILONIPA? BASI TAFADHALI UNGANA NAMI SEHEMU IJAYO




After being aware about my health I decided that I want to study hard so I can be a doctor either to cure myself or atleast to help people with sickle cell like me, and as we all know science subjects are hard and they need a lot of concentration but because I was falling sick every now and then and being hospitalized many times I found myself behind my classmates in studies, what have been helping me is the nature of brain I had (common sense), god gave me common sense which helped me in my studies and made me do well most of the time but things got complicated when I finished form two and waits for results, when the results where out i realized that I didn’t do well in science subjects therefore my dreams went in vain because I had to say goodbye to science subject and enter in arts class for form 3 and 4. I cried a lot that day to see my dreams melted just like an ice infront of my eyes and couldn’t nothing to prevent that, I cried all my way going home and too bad when I reached home I got sick, a month passed by while I was still sick in bed my condition was really bad and the pain was unbearable. But when I got well the first thing to do was running straight to headmistress office crying to request them think about my situation twice because I wasn’t ready to see my dreams disappearing like that……..
DO YOU WANNA KNOW WHAT HAPPENED IN HEADMISTRESS OFFICE?
WHAT WAS HER REPLY? THEN JOIN ME IN THE NEXT EPISODE………..

DNT MISS PART 4 OF MY STORY

PART 4

Lakini yote tisa kumi nilipoingia sekondari ambapo kwa uwezo wa mungu nilifaulu vizuri masomo yangu na kuchaguliwa kujiunga na shule ya sekondari ya wasichana jangwani mambo ndo yalipozidi kuwa magumu, mzunguko wa kuumwa uliongezeka zaidi na yote kwa yote nilikutana na mambo mapya, mazingira mapya na watu wapya ambao kwa namna moja ama nyingine ilikuwa lazima watambue hali yangu ili wajue jinsi ya kuishi na mimi, suala ambalo kwa kweli nilikuwa nikipata ugumu sana kuwaelezea watu na ni kitu ambacho huwa nakichukia hadi leo kwa kuwa hunikumbusha machungu mengi sana, nilipoanza fomu 1 siku moja mwalimu wa darasa aliingia kujitambulisha darasani akawa anapitia fomu ya kila mwanafunzi na ndo hapo alipopitia fomu yenye jina langu ambapo ilikuwa ni lazima uandike kama una maradhi yeyote nakumbuka alichosema Yule mwalimu ambacho kilinitoa machozi mbele ya darasa zima “khadija unaumwa sickle cell? Pole sana mwanangu mungu atakusaidia” nilijikuta tu nikilia kwani nilikumbuka jinsi ambavyo huwa naumwa na hapo darasa zima lilijua kuwa khadija anaumwa, kitu ambacho pia huwa nakichukia katika maisha yangu, mpaka leo hii namkumbuka sana mwalimu Yule kwa kuwa baadae alikuja kuwa rafiki wa mama yangu baada ya siku moja kunipiga na kuumwa ilimbidi mama amfuate hadi shuleni lakini baadae walikuwa marafiki wakubwa baada ya kujikuta wakifanya kazi kwenye ofisi moja na hadi sasa huwa anakuja nyumbani.



But all in all thing got uglier when I entered secondary school where by by god’s grace I passed and therefore I was selected to join jangwani girls secondary school, the drises I got increased and also I met new things, new environment and new people who in one way or another they had to know my condition so that they can know how to live with me, that was the thing that I always face some hardship explaining to people and it was the thing I hated most in my life until today, explaining to people that Iam sick that I have sickle cell because it reminds me of so much pain I went through, when I started form 1 one day class teacher entered the classroom inorder to introduce herself and she was going through our forms and she came across my form whereby it was compulsory to write in a form if you have any health problem, and I still remember clearly what she said, words tha made me to drop tears infront of the whole classroom “Khadija, u have sickle cell? Iam very sorry my child god will help you.” I actually found myself crying because I remembered the way I get when I fall sick and from then the whole class who were present that day knew that Khadija was suffering from sickle cell disease, the thing that I also hated the most those days, until today I still remember that teacher because later she became my mother’s fiend after I got sick because she bit me and unfortunately I fall sick so my mom had to come to school to talk to her but later thet become good friend’s after finding themselves working in one office and she comes home until today.

INAENDELEA........

MAISHA YA SHULE NA MTAANI KWA JUMLA
Basi tangu hapo maisha yamekuwa magumu sana kwa upande wangu hasa baada ya kuanza shule na kutakiwa kujitegemea katika baadhi ya mambo yangu, maisha yangu karibu yote hasa wakati wa utoto nimeishi hospitali, kiukweli nimeishi maisha magumu sana sikuwa kama watoto wengine wa kawaida nilipenda iwe hivyo lakini kutokana na kuumwa mara kwa mara nilikosa haki zangu za msingi hasa kucheza na watoto wezangu kwanza binafsi niliathirika kisaikolojia kiasi cha kujiona kuwa mimi ni tofauti na wengine nikawa muda mwengine najitenga hasa nilipoanza maisha ya shule hususan shule ya msingi nilisoma shule ambayo tulikuwa tukichapwa sana lakini kulikuwa na sheria kuwa wagonjwa hawachapwi lakini unakuta mwalimu mwengine hajui hivyo ilinilazimu kuvaa alama nyekundu begani kiukweli hali ile ‘it was killing me’ huwezi amini lakini hadi mstarini wagonjwa tulikuwa tukikaa kwenye mistari yetu wenyewe hatukutakiwa kujichanganya na wenzetu ile haikuwa nzuri na kama inaendelea nawashauri waache…


STREET AND SCHOOL LIFE IN GENERAL
Since then my life has been very difficult on my side especially after starting going to school and start doing some things independently, all my life especially when I was akid I spent it in the hospital, honestly I have lived hard life I wasn’t like other normal children, I wanted it to be that way but because of falling sick every now and then I lost my right to play with my fellow children, because I was psychologically affected to the extent of seeing myself different from others so I used to isolate myself especially when I started studying primary education, I studied in a school where sticks were common but there was a law that those who are sick were not allowed to be bitten but sometimes you may find other teach may not be aware of your sickness therefore we had to wore red dots on our shits like a symbol that iam sick, to be that honest I hated that situation and I was killing me inside, u cant believe but even in parade the sufferers were not allowed to stand in a line with others we were lining our own line, if this system still exist in schools I would like to advice them to stop it because they might not know but its kind of discrimination to the students who aren’t healthy…

itaendelea baadaye....

THE STORY CONTINUES...........

Nadhani mamangu alipatwa na uoga mkubwa na uchungu wa ndani kwa ndani kwa kuwa haikuwa mara ya kwanza kupata mtoto mwenye maradhi kama hayo aliwahi kupata mtoto wa kiume aliyeitwa Adamu mwenye maradhi kama yangu lakini baada ya miaka kadhaa baadae kabla ya kuzaliwa mimi alifariki dunia, hivyo kwa hakika kila nilipoumwa mama yangu alipata uoga sana akijua atanipoteza muda wowote na saa yeyote, na kwa kuwa tangu nilipogundulika na ugonjwa nilikuwa ni mtu wa kukimbizwa hospitali kila mara baada ya hali yangu kuwa mbaya hasa usiku wa manane hivyo kwa kipindi hicho majirani wengi walikuwa wakishirikiana na mama kila alipohitaji msaada usiku wa manane na hata leo nikikutana nao huwa hawaamini kuwa ni mimi na swali la kwanza huwa we ndo Khadija? Aisee kweli Mungu mkubwa, ndo umekua hivyo, vipi siku hizi huumwiumwi? Msalimie sana mama, na wengine hujikuta tu wakinisimulia wewe mtoto ulikuwa unamsumbua mamako sana kila mara ilitulazimu kukimbiza hospitali usiku wa manane kweli mungu mkubwa na mengine mengi.

Kwa hakika sikuwahi kuiona hofu machoni mwa mamangu alikuwa ni mwanamke jasiri mno labda kwasababu hakutaka kunitia woga hadi siku moja nilipoumwa kwa mfululizo hivyo tukaongozana kwenda hospitali baada ya kupata nafuu hapo ndipo nilipoona kiasi cha khofu alichonacho na hapo ndipo nilipogundua kuwa nilikuwa na kaka aliyekuwa na sickle cell na alifariki kwa ugonjwa huo baada ya kumsikia akiongea na daktari “doctor please help me, I lost a baby boy before” daktari akamjibu “usijali mama nitakusaidia kadri ya uwezo wangu”

Aidha, baadhi ya watu walikuwa wakinitamkia wazi mbele ya macho yangu we unaumwa sickle cell? Hufikishi miaka 20 lazima utakufa au ukipona basi wakati ukijifungua lazima ufe, hawakujali kuwa wakati huo nilikuwa bado mdogo sana ambaye kwa akili ya kawaida nilihitaji maneno ya kunipa moyo zaidi kuliko maneno ya kunivunja moyo na makali kama hayo kwa mtoto kama mimi ambaye kwa wakati huo nilikuwa na miaka si zaidi ya 9.


I think my mother had a fear and great pain inside because it was not the first time to gave birth to a sickler baby, she had a sickler boy whose name was Adamu but after some years later he passed away before I was born, therefore every time when I got sick my mother was fearing that she would loose me any minute, and because since I was diagnosed with the disease, they had to rush me to the hospital evry now and then because of the crisis especially at night. Thanks to the neighbours who was helping my mother at those night everytime she needed help and even today when I bump to them they don’t belive that it’s the same khadija, they would ask “are you khadija? You have grown up thanks god, don’t you get sick anymore nowdays? Many regards to your mother” other will found themselves telling me stories that I was very stubborn getting sick most of the time and they had to rush me to the hospital.

Verily, I have never seen the fear in my mother’s eyes, she wa a strong woman may be because she didn’t want to worry me until 1 day when we went to the hospital after getting sick often that was the day I saw how much my mother was worrying and that’s when I realize that I had a brother who died with sickle cell after overheard her talking to a doctor “doctor plz help me, I lost a baby boy before” and the doctor replied “don’t worry mother I will help you as much as I can”

Also, some people were talking openly to me, are you suffering from sickle cell? You will not reach 20 years old you will die o if you will survive then you will die when giving birth, they didn’t care that at that time I was too young to hear those words, I needed comforting words instead of those words I was below 9 years old only.


DONT MISS TOMORROW...

MY STORY

KILICHONISUKUMA KUFANYA JAMBO HILI

Kuna jambo kubwa moja lililonipelekea na kunisukuma mimi kuguswa na hili na kuamua kuanzisha kitu maalum kwa ajili ya watu wenye maradhi hayo, je ungependa kujua ni jambo gani hilo? Basi endelea kufuatana na mimi.



MAISHA YANGU TANGU 1989 HADI LEO
UTOTO
Kama nilivyotangulia kusema awali mimi nimezaliwa miaka 23 iliyopita nikiwa ni mtoto wa mwisho na pekee wa kike katika tumbo la mamangu, katika hali halisi tu hata kama ingalikuwa ni wewe hujawahi kupata mtoto wa kike au wa kiume ni dhahiri kuwa ungepatwa na furaha kubwa sana katika moyo wako si ndivyo? Hivyo ndivyo ilivyokuwa nafsi ya mamangu alipoambiwa amepata mtoto wa kike alifurahi sana na hakuamini mpaka pale aliponitia mikononi mwake, lakini furaha hiyo naweza sema iliingia doa nilipofikisha umri wa miezi mitatu tu baada ya kuanza kuumwa sana bila kujulikana kilichonisumbua, nilikuwa nikivimba mwili na mwili kubadilika rangi na kuwa ya njano lakini kwa kuwa mamangu alikuwa na uzoefu katika hilo japo hakuwa na uhakika ilibidi kunikimbiza hospitali ya taifa muhimbili bila kuchelewa kwa vipimo zaidi na ndipo hapo alipopatwa na huzuni baada ya kugundulika kuwa nina sickle cell anemia ugonjwa ambao nilirithi kutoka kwa baba na mama kwa maana wao wote walikuwa wana virusi vya ugonjwa huo, bila kuchelewa daktari aliamuru niachishwe ziwa la mama haraka iwezekanavyo ili kuzuia ugonjwa kusambaa zaidi na kuniweka katika matibabu ambapo kwa kuwa ugonjwa huo hauna tiba nilipewa dawa za kupunguza maumivu na dawa ziitwazo folic acid kwa ajili ya kuimarisha seli zangu ambapo tangu 1989 hadi leo 2012 bado natumia dawa hizo na itaendelea hivyo kwa maisha yangu yote hadi siku ntakayopumua pumzi yangu ya mwisho.

WHAT MADE ME DO THIS
Actually there is one thing that pushes me and made me to establish somethimg special for the people who have that disease, would you like to know what made me do that? Then join me in this mission

CHILDHOOD
As I said before that I was born 23 years ago, I was a last born and the only girl from my mumy’s womb, in reality even if it was you that you have never gave birth to a boy or a girl it’s very clear that you would be very happy in your heart right? Same goes to my mother when she was told that she has given birth to a baby girl. She was very happy and it was hard to believe until she had me into her arms, but that happiness I can say vanished when I was only three months old after falling sick without knowing what was wrong with me, my body was swallowing and my skin colour was changing to yellow but because my mother had an experience in that situation though she wasn’t sure she had to rush me to muhimbili national hospital without delaying for more tests and that’s when she was full of sadness after kearning that I was diagnosed with sickle cell anemia, the disease that I inherited from both parents because they were both carriers, without delaying the doctor advice my mother not to give me breast milking to prevent the disease spreading futher and put me into treatment, and because the disease has no cure I was given medicines to reduces the pain and the medicine called folic acid for strengthening my cells where by since 1989 till today Im still using them and I will use for my whole life till the day m goin to breath my last breath.

What is sickle cell disease?

Sickle-cell disease (SCD), or sickle-cell anemia (or anemia, SCA) or drepanocytosis, is an autosomal recessive genetic blood disorder with over dominance, characterized by red blood cells that assume an abnormal, rigid, sickle shape. Sickling decreases the cells' flexibility and results in a risk of various complications. The sickling occurs because of a mutation in the hemoglobin gene. Life expectancy is shortened. In 1994, in the US, the average life expectancy of persons with this condition was estimated to be 42 years in males and 48 years in females,[1] but today, thanks to better management of the disease, patients can live into their 50s or beyond.[2] In the UK, the current life expectancy is estimated to be 53–60 years of age.[3]
Sickle-cell disease, usually presenting in childhood, occurs more commonly in people (or their descendants) from parts of tropical and sub-tropical regions where malaria is or was common. One-third of all indigenous inhabitants of Sub-Saharan Africa carry the gene,[4] because in areas where malaria is common, there is a fitness benefit in carrying only a single sickle-cell gene (sickle cell trait). Those with only one of the two alleles of the sickle-cell disease, while not totally resistant, are more tolerant to the infection and thus show less severe symptoms when infected.[5]
The prevalence of the disease in the United States is approximately 1 in 5,000, mostly affecting Americans of Sub-Saharan African descent, according to the National Institutes of Health.[6] In the United States, about 1 out of 500 African-American children born will have sickle-cell anaemia.[7]
Sickle-cell anaemia is the name of a specific form of sickle-cell disease in which there is homozygosity for the mutation that causes HbS. Sickle-cell anaemia is also referred to as "HbSS", "SS disease", "haemoglobin S" or permutations thereof. In heterozygous people, who have only one sickle gene and one normal adult haemoglobin gene, it is referred to as "HbAS" or "sickle cell trait". Other, rarer forms of sickle-cell disease include sickle-haemoglobin C disease (HbSC), sickle beta-plus-thalassaemia (HbS/β+) and sickle beta-zero-thalassaemia (HbS/β0). These other forms of sickle-cell disease are compound heterozygous states in which the person has only one copy of the mutation that causes HbS and one copy of another abnormal haemoglobin allele.
The term disease is applied, because the inherited abnormality causes a pathological condition that can lead to death and severe complications. Not all inherited variants of haemoglobin are detrimental, a concept known as genetic polymorphism.



Sickle cell ni disorder ya red blood cells ambapo cell inakuwa na shape isiyo ya kawaida ina kuwa kama mwezi mchanga na rigid, inakua vigumu kupita kwenye blood vessel matokeo yake kufanya damu isipite kwa urahisi au kuzuia kabisa, matokeo yake ni kusababisha upungufu mkubwa wa damu sehemu zingine za mwili (anaemia) ambayo huitwa sicle cell anaemia.kawaida cells ni round na ni flexible.

Tabia nyingine ya sicle cell ni kufa mapema zaidi kuliko cell zingine kabla ya kuwa replaced, cell hizi hufa baada ya siku 10-20 na kusababisha anaemia (upungufu wa damu) wakati cell za kawaida huchukua siku 120 ndipo hufa.

Sickle cell ni disorder ambayo mara nyingi ni ya kurithi toka kwa wazazi,hali hii husababishwa na mabadiliko yasiyo ya kawaida yanayotokea kwenye DNA,ambayo ndiyo huhusika na utengenezaji wa vinasaba(gene). DNA ni master plan ya cell so makosa yanapofanyika katika master plan hii husababisha magonjwa au disorder mbalimbali mwilini mfano sicle cell nk. Sickle cell huanza kujitokeza mtoto awapo kuanzia miezi 4 na kuendelea.
Ni tatizo la chembe hai (seli) nyekundu za damu ambazo ndo huhusika na kusafirisha hewa ya Oxygen mwilini.
Hizi seli zilizoathirika zina-assume shape ya MUNDU (sickle) na ndo jina hilo linavyopatikana.
Normal red cells ni mviringo bapa.

sickle cell utangulizi (greetings)

Naitwa Khadija Abubakari Kauli, nilizaliwa tarehe 19 mwezi wa 4 miaka 23 iliyopita katika hospitali ya taifa ya muhimbili, lengo langu kubwa la kuanzisha blog hii ni kwa ajili ya watu wenye sickle cell Tanzania.

Nimekuwa nikisikia vyama na kampeni mbalimbali za magonjwa sugu na yasiyo na tiba mbalimbali ikiwemo kifua kikuu, ukimwi, kansa na mengine mengi lakini kamwe sikuwahi kusikia hata siku moja mtu yeyote akizungumzia ugonjwa uitwao sickle cell anemia (upungufu wa damu ambao hurithishwa kutoka kwa wazazi kwenda kwa mtoto) ilihali ni ugonjwa ambao upo na kiukweli una athari kubwa sana hasa katika jamii za kiafrika, kwasababu hiyo basi watu wengi wamekuwa hawajui kuhusiana na ugonjwa huo hasa kwa nchini kwetu hapa Tanzania.

My name is khadija abubakari kauli, I was born 19th April 23 years ago at national hospital muhimbili, the main aim of establishing my new blog is for the sake of the people live with sickle cell anemia in Tanzania especially and my long term goal is to establish a centre for their care.

I have heard of many parties and lots of campaigns concerning getting rid of chronical diseases like TB, HIV/AIDS, cancer and many others but never in my life ever heard of any campaign or anyone talkin publicly concerning sickle cell disease actually sickle cell exist and it has a major effect in African societies, and for that reason many people are unaware about sickle cell especially here in our country Tanzania.