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| Akuku Danger |
It’s over 20 years now since Mannerson Ochieng, 34, was diagnosed with a chronic blood disorder. Life has not been easy for him despite being a popular comedian in the country.
Many Kenyans associate well with his alter ego, ‘Akuku Danger’, a name that was probably inspired by the late renowned polygamist.
He’s optimistic to live for over 80 years fighting this condition. Akuku Danger was born in 1990 in Migori County in a family of six siblings. He was born a healthy child, but things started going south when he was 7 months old.
“According to my mother, when I was born, there was joy in the family. Everyone was happy. Later on, I started falling sick now and then. I was taken to hospital, treated and within a few days’ I got sick again. I rarely finished a month before I became sick and my distraught parents decided to take me to an urban hospital to for further check up to find out what was ailing me,” Akuku Danger starts off.
“Initial signs that stressed my parents were swelling in my hands, having yellowish eyes (jaundice) and generally my body was pale. In 1997, I was taken to a city hospital and after blood tests, I was diagnosed with sickle cell anaemia or SCD,” he reveals.
“Doctors at the facility explained to them about the disease because it seemed something new. At that time, there was very little knowledge about some diseases especially the chronic ones. It was a big shock,” he reveals.
Dr Kibet Shikuku, Hemato-Pathologist at the Nairobi West Hospital explains, “Sickle Cell Anaemia develops when one’s body makes an abnormal form of the protein (haemoglobin) in the blood that carries oxygen. The abnormal haemoglobin (HbS), causes red blood cells to change their structure and become like sickles, they clump together with blood vessels thus causing pain (pain crises) and damage to tissues”.
He adds, “People who suffer from SCD inherit 1 set from their mother and 1 set from their father. To be born with sickle cell disease, a child has to inherit a copy of the sickle cell gene from both their parents. This usually happens when both parents are “carriers” of the sickle cell gene, also known as having the sickle cell trait.”
According to World Health Organization (WHO), 14,000 children are born with sickle cell every year in Kenya, and, on a global scale, over 300,000 children are born with it.
“In the absence of routine newborn screening and appropriate treatment, an estimated 50-90 per cent of those born with the condition die undiagnosed before their fifth birthday in Sub-Saharan Africa,” says a report by the Ministry of Health.
“Haemoglobin disorders are genetic blood diseases due to the inheritance of mutant haemoglobin genes from both, generally healthy, parents. Roughly, 5 per cent of the world’s population carries trait genes for haemoglobin disorders, mainly, SCD and thalassaemia,” WHO says.
According to Dr Shikuku, signs and symptoms that accompany this disorder range from jaundice, pain crises, frequent infections that force a patient to camp in the hospital now and again, anaemia, low haemoglobin because red blood cells are destroyed, while patients tend to suffer from strokes due to poor supply of blood to the brain.
Medics who diagnosed Akuku Danger, told his parents that his condition is genetic and there was high possibility that his children will have it. According to the Centers for Disease Control and Prevention (CDC), SCD is a genetic condition usually present at birth. It is inherited when a child receives two sickle cell genes, one from each parent.
“I was enrolled in school like any other child. It was a tough experience because this disorder attacks you even if you are under medication. Pain crises is the most tormenting sign that every “Sickler” fears, and this is what was happening to me in school. Imagine being admitted to hospital often, missing lessons was normal to me from Class 1 to Class 8,” recalls the comedian.
“I was told by medics, when you have SCD, it means blood cells look like a sickle so they can’t pass some joints hence clotting, causing pain – when this happens you need to take a lot of water or go for blood transfusion,” Akuku Danger says.
According to WHO, “Haemoglobin is a protein in your red blood cells that carries oxygen from your lungs to the rest of your body. If your haemoglobin levels are abnormal, it may be a sign that you have a blood disorder”.
For the comedian, since he was diagnosed with SCD, he has gone through many blood transfusions that he has even lost count.
“These blood transfusions are crucial because minus that, other complications will set in, for example lack of oxygen so transfusion is the immediate response to get back HB at optimum level,” he explains.
SCD, according to him, is one of the most expensive disorders to treat.
“I don’t want to imagine how a family back in the village, handles a child with this condition because you must spend a lot of money on drugs daily. It’s a great nightmare for parents and caregivers,” he observes.
He has founded the Center for Sickle Cell which champions for advocacy and awareness on the condition.
“Center for Sickle Cell also calls for mandatory genotypic test so that we can protect the future generation from the disease. In addition, we are petitioning the government to subsidise all SCD drugs,” he explains.
“To all Sicklers, don’t ever regret having this condition, see it as an opportunity to transform your lives. You have to accept, take drugs everyday as prescribed and I bet you will lead a normal life. My career is going on well and I don’t see much effects of this condition on it,” he says. The journey has not been smooth as she lost a sister to SCD.
“She left a big gap in our family but we understand God has a plan for everyone and anything happens with a reason. May her soul rest in peace,” he painfully recalls.
According to Dr Shikuku, there’s no exact cure for SCD. But a lot of treatment options that can help a patient who’s battling with the condition, exist.
“As a country, we are somewhere in efforts to silence it. We are proud to say that Kenya is trying to develop specialised facilities for Sicklers. Hemophilia Association through Hemophilia Programme is setting up sickle cell hemophilia clinics and so far, 16 counties have benefited,” he adds.
Bone marrow transplant is another treatment option for SCD people but Dr Shikuku warns that, it’s plagued by challenges.
“A lot of Kenyans have been travelling (overseas) to look for bone marrow transplant but as a country, we have not put enough effort on it. Scarcity of this service is because the government has not put resources on bone marrow transplant because of its expensive nature. It’s true that this service is curative but what people forget is the cost of management immediately after transplant. Government should do something on this”. He also urges patients to accept their situation, take drugs as prescribed by their doctors since the condition can only be managed.
By Rodgers Otiso