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
Email:
askamulale@gmail.com
Twitter: @UgandaWarrior
Mob:
0779 210 960
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