Monday, 23 June 2014

Sickle cell disease: The bubonic scourge of our time

By Ssebandeke Ashiraf

On 19th June the world commemorates World Sickle Cell Day.
Over 200,000 babies are born each year with sickle cell disease in the whole world with Uganda contributing about 33,000 a 17% of the global annual births. About 80% of these babies born in Uganda do not live to celebrate their 5th birthday.

20% Ugandans carry the sickle cell gene, which account for 7.5 million of 37.8 million population (United Nations Social and Economic Affairs Division 2013).  

According to UNICEF 141,000 children below the age of 5 years die annually in Uganda and 16.3% have sickle cell disease. This means 22,983 children die of sickle cell disease, 63 children with sickle cell die every day and 3 children are lost every hour that passes.

‘The bubonic scourge of our time’. ‘The worst health calamity in human history’. These are ominous words and phrases that can describe sickle cell disease.

The literature on sickle cell disease has been growing, but not the awareness about sickle cell, judging from vast ignorance that persists about the cause of sickle cell disease which threatens the survival of humanity.

The spread of sickle cell all over the world is rooted in modern man’s ignorance. Because the modern man has decided that folly is better than wisdom, sickle cell continues to take its heavy toll on humanity.

The spread of sickle cell disease in the modern world is indicative of ignorance. There is always a direct relationship between tribe and the level of the spread of sickle gene prevalence rate in Uganda. The available data on the prevalence of sickle cell trait (SCT) and annually estimated number of sickle cell disease cases in Uganda is based on the past survey by Lehman and Rapper in 1949. The prevalence of SCT varied among Ugandan tribes, with the Karimojong, Bakiga, Banyakole and Bahima recording the lowest frequency of 1-5%, Baganda, Iteso, Acholi and Banyoro recording 16-20%,  Basoga, Bagisu and Lugbara recording 20-28% and Bamba recording the highest frequency of 45% which is believed to be the highest in the whole world.

 In Uganda, sickle cell anemia remains the most frequent and traumatizing genetic disease which continues to devastate the families of sickle cell patients both mentally and economically. Increasingly sophisticated treatments have cut the sickle cell death rate in industrialized countries but in Sub Saharan Africa the epidemic is gathering momentum.

In most countries in Africa leaders are not worried about the costs both economic and emotion this disease causes. I should say to those who wield the power to change the current situation “If you do not work with those who are suffering today to address the problem of sickle cell you will have to deal with them later when they will get more dangerous and more expensive.

Many people think that sickle cell disease is a health issue. You are wrong. Sickle cell can no longer be confined to the health or social sector portfolio. Sickle cell is turning back the clock on development. To be effective prevention measures must be paired with investments that will create jobs, invigorate the educational system and pull the poor out of the ‘here now’. People who are trapped in poverty aren’t going to do much about health care. If everything else in this country is falling apart to pieces, it is not going to have much effect.

For every action, there is a reaction, and sometimes the reactions plague the ‘innocent bystanders’ – the thousands of children who are born with sickle cell disease, innocent children who will not live long because their parents did not worry about the outcomes of their actions.
The Holy books (Quran and Bible) teach us that many human communities were destroyed because the people were self indulgent to the point of self destruction. These communities failed to heed the advice of God’s prophets and the dictates of ‘inner prophets’ (i.e the human reason).

God is compassionate and merciful, but God’s laws are impersonal and universal, hardly making any exception. When people play with fire they get burned. Those who court danger will reap the resultant calamities.

Today Sub Saharan Africa unfortunately has the largest number people with sickle cell disease with Nigeria having over four million people and about 40 million people carrying the gene.

What should the Third World do to stem the tide of sickle cell? The spiritual, political and business leaders must come together to find out how they can control this crisis as no part of the world can claim to be immune to this threat.

By creating jobs, by infusing the spirit of hope in the poor, by properly using the educational system, the mass media and the pulpits, the government, the private sector as well as religious leaders can bring about sufficient awareness about this deadly disease.

Knowledge is power, and the poor in Africa have become the worst victim of this epidemic, because just like material wealth, knowledge and awareness have not been evenly distributed in the African continent.


The author is the Country Representative
African Sickle cell News and World Report – Nigeria
Twitter: @UgandaWarrior        

Mob: 0779 210 960

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