I am all the above with the exception of my parents and close relatives who have been there for me all the times, I was diagnosed having sickle cell anaemia at the age of 2 ½ years after frequent crisis especially after 2 years of my life. One of my aunt told my mother not to take me to the hospital because I had developed yellow colour in my skin and eyes (jaundice) with the belief that if they inject me with a needle I will die, instead she went to bring some herbs for me to drink, which my mother did with doubt. She could not go against the decision because we were living with my father’s family, and losing a baby from not listening was a big trouble, especially to a daughter in law.
After a few weeks, my mother travelled with me to Dar es Salaam to attend her brother’s wedding when I fell sick again and was admitted for malaria for 2 days, again the yellow colour came back, one of my uncles advised the family to see a traditional healer for Spleen problem as it seemed enlarged, my mother was reluctant but they still took me without her escort to the place where they put a few small slashes on my body and a certain powder on where the spleen was suspected to be enlarged.
The wedding was over and the family was planning to travel back home, when my mother pleaded with her brother (a Pharmacist) to seek medical attention for my problem, the procedures were done and the family has to wait for the results for another one day.
My mother cried a lot for a few days and pulled herself together and decided to take care of me no matter what, she gave me good nutrition, made sure she treated my ailments at an earliest opportunity, started taking me to the clinic for monthly visits and I started taking folic acid on daily basis. During crisis they gave me painkillers, and stayed sleepless nights, family members gave each other turns to look after me day and night and that became my life. My school attendance was very poor as I have to stay home during crisis; I developed some resilience with time and accepted my health status and learned to live with it. I heard people gossiping about me, some said she will not be able to have children, she will not be able to live a normal life and many hurting words, and these made me cry at times but my mother encouraged me to ignore the gossips, which I did. I love children, and wanted to have one child of my own but I was scared and did not disclose my wish to the family because I knew they will not accept, however I planned to try my luck. I never got blood transfusion in my life until when I was waiting for my son’s delivery which became necessary , again my wish came true I have a 3 year boy child who has added to my story.
To be sick is not the end of an active life; I knew that if I get employed by someone, the employer will not tolerate my absenteeism from work, especially during crisis periods, so I decided to employ myself by doing small businesses to earn my income.
The birth of my child gave me a new beginning, I wanted to tell all those around me that Sickle Cell is not a death sentence, I wanted to spread the word especially to the parents who are facing the same challenge in life and this is why I decided to be a Sickle Cell Champion.
I started attending at the Sickle Cell Children Clinic, linked with the doctors, who asked me to talk to parents, create awareness on how to live positively with sickle cell, giving myself as a living example, I created a good network of parents whom we exchanged ideas on Sickle Cell. I started visiting homes where there were Sickle Cell children and that became my passion, to tell people that the disease is not a death sentence, I am happy that I have managed to bring a smile to many parents and children.
I still wanted to reach more people with the same massage, including the government and I knew that without concerted efforts, I cannot do it alone that is why in collaborating with the doctors in the Sickle Cell department at the referral hospital (Weill Bugando) and those who have been affected by sickle cell as patients, parents/ caregivers to children decided to create a voice through joint planned advocacy sessions both physical, media and online platforms including Sickle Cell world days, school and home visits, and have been able to reach more than 5000 people in 2018/ 2019. We continue to discuss Sickle Cell disease, share information, experience and mostly to influence the health systems to act in favour of young children especially enabling testing at an earliest stage, availability of drugs for sickle cell patients, free medical services, and political will in creating awareness to the wider community regarding Sickle Cell. I and a few others have decided to form an organization called Tanzania Sickle Cell warriors (TASIWA) so that we reach more people by operating legally in Tanzania.
Josepha Kwila Chokara, TASIWA Co-Founder and SCD Warrior.