Its time for a break after 80 minutes of lecture on April 10.I remember an acquaintance and decide to chat with her. It goes like this;
Me: Hi hope you have been well, the kids too.
Her: Hi we have been well. We lost Sammy last year I don’t know if I ever let you know.”
Tears flow down my cheeks. I bow my head towards my desk and let my emotions take over for a couple of minutes. The alarm rings signalling continuation of class. I’m fidgety I’m shaking my legs, my blood is boiling. I’m sad she lost a second child and I feel for her. In this last class session my world is filled with flashbacks of my previous interaction with her family.
“He handed me an envelope and asked me to give the lab results to the doctor. I was anxious and once outside I sat on the grass holding Roy in my arms and opened the envelope. It read SCA. My heart sank for I knew what that meant,” Said Foulata Kwena, a woman who in that harsh way discovered that both she and the husband had the sickle cell gene and had passed it on to their son.
Sickle cell disease is a haematological disorder whereby a persons red blood cells will have abnormal haemoglobin called haemoglobin S or sickle haemoglobin. Haemoglobin is a protein in red blood cells that carries oxygen throughout the body. This protein takes the shape of a sickle instead of the round shape normal haemoglobin proteins take.
Even though the disorder has six different types the most common is SS otherwise known as sickle cell anaemia. The patients often called ‘sicklers’ are anaemic throughout because the sickle shaped cell has a shorter lifespan compared to the normal cell.
People who have sickle cell disease inherit two abnormal haemoglobin genes, one from each parent. There are children who inherit only one s gene and they are known as carriers. They can also pass it on to their children if they match up with a fellow carrier or ‘sickler’.
Intermarriage between sicklers or carriers to normal persons predisposes them to 50 percent chance to zero chance of sickler children.On the other had this marriages presents a range between 100 percent to 25 percent of carriers versus 50 to 25 percent of normal offspring. However, children born of two ‘sickler’ parents are automatically ‘sicklers’.
In Kenya the disease is dominant in the lake region and the ocean region. Though not proven this according to researchers of the disease could have something to do with it as a result of mutation. The affected tribes live in western and coastal parts of the Country. There are about 5 out of the 42 tribes of Kenya that are affected. The luo, luhya, kisii, kuria and the Mijikenda sub tribes. In recent years Sickle cell has been found among communities where it never existed like Somali and Turkana tribes.
1.Inter-marriage.
If Obama a luo man marries Wanjiku a woman from central Kenya, there will be zero chance of their child having the SS gene.
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Even though the heart dictates who one falls in love with and marries, intermarriage between tribes that are susceptible to the disease and those that are not is the ideal cure. If adopted the disease will be extinct since it will not be passed to the next generation. In affected tribes knowledge of sickle cell status can be hidden to the children as was the case with Foulata.
"As I sat there weeping profusely, my brain was taking me back. I remembered a step sister who died as a teenager. In her troubled days She would sleep with her feet up against the wall. I saw Roy do that during this crisis and it dawned on me that we had it in my family." Said Foulata adding that the mentioned sister died as a teenager. The husband she said, could not recall someone with the disease in his family.
According to the World health Organisation, most children born with sickle cell disease die under the age of five. It is therefore one of the causes of child mortality.
Foulata and the husband who are both from the luhya tribe did not realize that the disease existed in their families. This is common among the affected tribes since most children die under the age of five and are forgotten. Those that continue living past that are sickly from time to time. This ‘blood sucking’ condition which they do not understand is seen as a curse in the affected communities and most cultural homes hide it due to the stigma that comes with it.Children born with sickle cell are as good as dead in their eyes. It is believed that they cannot live beyond the age of 18. In such families women give birth to many children so that when the one's with the disease die they can have a couple that live. Foulata for example has been a mother of four. Three ‘sicklers’ and one carrier.
Even though the Kenya’s education system has a topic on gene disorders taught in high school biology, the understanding of the disease among all Kenyans, is limited. Many people in the affected areas do not manage to get to high school where this is taught and those who have not experienced it are not able to understand it. Therefore creating awareness on this among Kenyans will enable people to make more conscious decisions.
WHO recommends testing. If couples going into marriage know their sickle cell status they can make wiser decisions. If children born are tested after birth it prepares Parents on the task ahead.
2.County Government intervention.
Affected counties should allocate resources to diseases which are unique to their regions. In this case this disease , affects 16 counties out of the 47 in the country.Unity between affected counties can go a long way in dealing with this condition.
Areas like Kilifi county in the coast have a sickle cell clinic at the county general hospital, a factor catapulted by the existence of the National medical research institution in the area. If the Counties came together they can share ideas and resources and also rally for the disease. Kilifi county through this hospital has some statistics that can be used to rally support. However collective research in the county has not been done. The counties can easily conduct research if they take it up and this can attract support from the central government and other support agencies.
3.A marriage between the leadership.
The kenyan Constitution recommends equal treatment for 'Wanjiku' a term used to refer to the Kenyan Citizen in the constitution. However this is not always the case.
Presidency and power in general plays a huge role in how resources are allocated and policies are made. Kenya is also very tribal and Kenyans vote on tribal lines.
Sickle cell disease prone regions, the western and coastal parts of Kenya are the opposition strongholds. They have not had a president or a leader who would influence resource allocation to the condition. because all that have been in power and their tribesmen have little or no knowledge of sickle cell disease since it does not exist in their tribes. A union between the opposition and Government in pursuit of resource allocation for the disease, will go a long way in dealing with the problem.
4. ‘sharing the food basket’ .
Sickle cell disease is too small to get Government attention because it is not among the 20 biggest diseases in Kenya. However there is a relationship between different big diseases like malaria and other non-communicable diseases and cancers to sickle cell.The government and the world should consider the big diseases and related ones in resource allocation.
Sickle cell disease in itself does not kill but makes the body functioning and immunity of the Patients compromised.
Malaria is one of the killer diseases of sickle cell Patients. In Kenya malaria prone areas are the lake and coastal regions, the same regions where sickle cell disease exists. Many parents with sicklers have experienced a situation similar to Foulata’s.
“We went in with Malaria and in a matter of hours it escalated to meningitis and in no time Roy was dead,” Foulata said to me as she expressed the pain of losing a son out of negligence by medical professionals. “ The doctor was unavailable and the nurses ignored my plea.” She said.
Malaria is on the top 20 killer diseases in Kenya and is given enough funding by the government and other agencies. Kenya’s Government can direct a portion of it to diseases that have some affiliation to it like sickle cell disease.
Dr. Charles wafula a Pediatrician in Nairobi and head of Child sickle cell foundation, acknowledges that Sickle cell carriers do not get Malaria. This he sees as an obstacle to the fight against sickle cell disease. To deal with the Kenyan problem, he advices that, an assumption that everyone in the identified regions, who is not a ‘sickler’ be considered a carrier. This he justifies by the fact that they've survived malaria. He believes that this strategy will encourage gene testing.
‘Sicklers’ tend to get other diseases like kidney failure and certain cancers. Some of the non-communicable diseases they are susceptible to are among the big 20 diseases in Kenya or have adequate funding to deal with the problem. A diversion of the resources to sickle cell as an affiliated condition can help deal with this small disease that has been neglected for many years.
5.Union between health related organizations
“ Losing Roy pushed me to do something. I discovered an organization called Child sickle cell foundation which I joined,” Faulata said. The organization, which is a support group for sickle cell patients and their families, was what she needed at the time and later when she gave birth to twins who were both ‘sicklers’. As the deputy chair of the Organization she has seen the organization make a difference in ‘sicklers’ lives. It operates a weekly clinic in Mathare, a slum area in Nairobi among other significant roles.
There are various organizations like this one that deal with individual non-communicable diseases. If these organizations came together to form a larger organization that draws attention to the diseases, then sickle cell and other smaller non- communicable diseases can get the attention they require.
Union between Countries affected by sickle cell anemia in the African region and the world at large could also play a big role in management and erradication of the disease. Some Countries like Jamaica have invested in problem solving and their ‘sicklers’ live long. Uganda has a dedicated sickle cell hospital and the level of treatment and care is advanced compared to Kenya's. Kenya can partner with such countries and improve the situation.
The only cure for Sickle cell disease like Leukemia is blood and bone marrow transplant. This is not available in Kenya and it's very expensive abroad. However Nigeria a first among the affected Countries in Africa is now offering the service. If African Countries affected by the disease worked with each other or came together to deal with the disease, that would go a long way in resolving the problem.
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