Voices of sicklers and carers
As part of activities leading up to the commemoration of this year’s sickle cell day on Wednesday June 19, 2019 in Cameroon, Joy to Endure Foundation of Arrey Echi in partnership with Etoug-Ebe Baptist Hospital on Saturday, June 15, 2019 organised a Sickle Cell Disease (SCD ) free screening campaign at Etoug-Ebe Baptist Hospital where over a hundred turned out.
Highlights of the event included educational talks, awareness, sensitization and counseling. Focal persons during the event were Doctor Budzi Michael, a General Practitioner who has taken keen interest in SCD, Arrey Echi who since 2015 has decided to use her experiences to raise awareness and usher in a new dawn for those living with sickle cell.
This reporter decided to give a listening ear to sicklers and carriers as they tell their stories about living with and managing sicklers.
Somo Frank should be in his mid 20s and says they are minimized. ”It is so difficult to live in the society where you are been minimized, facing difficulties, people neglect you because you are a sickler. You cannot achieve your goals… You are not treated with people at the same level because you suffer from sickle cell. You go for a job, they minimize you, in times of crisis, you go to the hospital and they still minimize the illness sometimes telling you they have other things to do and sickle cell is a minor disease.” Another sickler we had a one-on-one chat with who looked jovial and in high spirits is 20 years old Tatah Denning. Denning dreams of becoming a business tycoon and to live to help other children going through what he experiences today. Hear his story…“I have been a sickler for 20 years now but it was discovered that I am a sickler at the age of 7. With our situation, if your family does not have money your life can end when you have not reached because we live on drugs which are really expensive… As a sickler, you are not allowed to do what other children are doing like play… They never believed I was a sickler. My parents thought it was something spiritual. There, they took me to places for prayers like Nigeria but finally accepted when nothing changed.” About his experiences and acceptance, Denning says, “From the society you get mockery, you get slances like, he is a patient and cannot do hard work but what I notice is that sickle cell patients are also strong. Sicklers have a mechanism that fights malaria compared to other children. The hard part with children suffering from sickle cell is that when they fall sick, they are easily put on oxygen and blood transfusion very common… My dreams for the future aren’t only for myself but to other sickle cell children because I know what they are passing through. I really want to be one of the big business people in town and while doing that I really pray God helps me to be able to help other children living with sickle cell because I know what they are passing through.”
Those are the voices of some sicklers. Looking around, I saw this young girl of about 7. I didn’t ask what brought her there because I knew the obvious answer and my question might have sounded embarrassing. I went close to her and robbed her shoulder, then, added, “how are you my friend?” She looked at me with a kind-innocent face and replied, “Fine” Just then, the father who was watching us from a distance moved closer and asked if there was any problem. This gave me the opportunity to talk with the father who shared his painful story and equally encourages parents to believe in these children. Hear Mr. Khan… “I was so furious when i got the news that my two children were sicklers. So confused! However, my child is in form 3 and some normal children born with her at the same time are no longer living. I have handed everything to God because before He gave me those sicklers, He already programmed how I am going to take care of them. Out of the two I have, 13 and 7 years old, one was just discovered 2 weeks ago. The main problem is because we never tested ourselves before. There is a saying that love is blind. We went into marriage without thinking about that. It is just now that before you get married, it is really necessary you and your partner go in for that test… When this children are in crisis, you can’t sleep. Financially, i and my wife, we are trying because i never knew that up to today i will still be standing on my feet. I have hopes in life as far as this children are concerned. I know they shall bury me instead of me burying them. The advise I will give to those out there, especially these young people between the ages, 12-30, if you are not yet married, it is good you go in for the test before you get married. If not that I and my wife, we understand ourselves by accepting that this is God’s gift, maybe today I would have told you i am single now ; that my wife has divorced or I have abandoned the children with my wife. People in the same situation, I will advise them that these children need happiness. The worst thing to do is to divorce. When you divorce and times come that they either need their father or their mother and they are not there, they will feel bad and those crises may develop. Some of these children will embarrass some of us the normal children; they will be leaders of this nation tomorrow.”Just then, I heard madam Matilda dominating discussions in a small group made up of mothers whose children are sickers. They talked about crisis management, the drugs and how their various crises happen. One thing that marked me was when I heard her say she cannot put to birth again. I met her and before I barely asked a question, she was raining down her pains… “I have 3 children and two are sicklers… (almost in tears) I blame myself because I did not know. If I knew that I am going to have sicklers, I couldn’t have gotten myself into it because today I am suffering, I am really suffering. If the crisis starts, it can make like one or two weeks before it goes down and when it starts, the child will not like to see food talk less of eating…I am taking a decision not to have children again because I know what I am passing through. You cannot get to something and repeat yourself again to the very situation. I am advising young people that let any of them not have sex with a boy without them carrying out test. You see your child passing through serious pains for two good weeks that even double that of a woman in labour. For two weeks the child is down and you the parent, you cannot carry out your normal activities. I have been struggling with them alone and I know what I spend in the hospital. When the father discovered it and noticing what we spend in the hospital he ran away. Mother, Njuma Matilda.
From the stories and testimonies above, one can only wish greater awareness campaigns are done even at the national level because as it stands, we have not heard about plans by the Ministry of Public Health joining warriors and stakeholders to sound the awareness trumpet as it is always the case with World malaria day on April 25 and other killer diseases.
Awoh Caleb Ndazua