Sickle Cell Disease, also called Sickle cell anemia and drepanocytosis
is a hereditary blood disorder, characterized by an abnormality in the
oxygen-carrying haemoglobin molecule in red blood cells. This leads to
a propensity for the cells to assume an abnormal, rigid, sickle-like
shape under certain circumstances. Sickle-cell disorder is associated
with a number of acute and chronic health problems, such as severe
infections, attacks of severe pain (‘sickle-cell crises’), and stroke,
and there is increased risk of death. Sickle cell disorder occurs when
a person inherits two abnormal copies of the haemoglobin gene, one
from each parent. Several subtypes exist, depending on the exact
mutation in each haemoglobin gene. A person with a single abnormal
copy does not experience symptoms and is said to have sickle-cell
trait. Such people are also referred to as carriers.
Some ‘sicklers’ die at an early age while others survive to a stage
when it is thought the individual has crossed the danger period and
can manage him/ herself, then the grim reaper strikes. Words would
fail one to describe the quantum of pain it causes the parents and
loved ones of such sickle-cell patients when they are lost. It is
still in doubt which of the cases hurt more; that of one that died as
a child or one who manages to grow, school, get established in
business and just when such one is about to get married, he or she
gets down with another sickle-cell crisis and, unfortunately, does not
survive it. www.ostareze.com
Yet, interestingly most ‘sicklers’ I’ve met exude indomitable spirit,
way beyond average. Maybe that is the way nature compensates them for
their condition. The ‘whiz kid brothers’ who were my class mates in
secondary school, (who are presently both proud owners of brand new
SUVs) to Aisha Maureen Edward, a lady in her thirties who used to be
an image maker for the Nigerian army as a roving reporter for SOJA
(AHQ), Valiant (NDA), Stallion (1Div.), Dragon (82 Div), Watchdog
(NACMP) until she resigned on health grounds and is now a Moral
Crusader (Coordinator of Centre for Moral Mentorship), and a Media
Consultant (Director of Schofield Media Consult), are two good
examples of the few sickle cell patients who exhibit in no small way
this indomitable spirit extraordinaire their kind is blessed with.
Maureen Edward frowns at the appalling way sickle-cell is being
handled in Nigeria. In her view, no sickle-cell patient should be
shown pity as they are not easy push-overs or beggars. In her words,
‘the idea of holding fund-raising programs in the name of sickle-cell
anemia is fraudulent as the organizers of such are only defrauding
well-meaning well-to-do Nigerians to feed their family, and should be
probed and prosecuted by the law.’ The idea of giving my kind money
for our drugs is killing us. Rather, people in my group should be
given opportunities to be resourceful. The undeserved stigmatization
that has been the curse my kind carries about from the family to the
general society, should be addressed promptly.’
‘People living with sickle cell challenges are not being properly
managed in Nigeria and I would want to draw the attention of the
federal government to the issue. Nigeria is still the country with the
highest case of sickle-cell patients. This is because the issue is yet
to be addressed as it should. Rather, the likes of Professor Akiyanju
would go on television to solicit for funds. Sickle cell patients are
not disabled and do not need that. What they require is a proper
re-orientation of the society on the right attitude towards them and
setting up counseling centres for them because they are victims of a
lot of psychological abuses. I propose that the government provides a
special NHIS Identification card for the people living with
Sickle-cell Anemia to make their access to frequent medical attention.
There is also a need for a marriage control by the government to check
couples who go ahead to marry and mate when they know they are both
carriers, thereby generating sickle-cell offspring. Nobody is
hammering on genotype crossing in the schools and churches. The
churches are supposed to set up compulsory genotype test on marriage
couples they counsel. The worst stigma is that experienced by those
living with sickle-cell in their families. As ladies, they are
expected to get married quickly and that is usually difficult as they
are considered liabilities. Not to talk of the discrimination against
them and the envy that arise from their peers because they are usually
more academically sound. I’m calling on Bola Ahmed Tinubu and his wife
who is a senator should see the damage Professor Akiyanju is causing
their foundation, which they started in goodwill given their daughter
who passed on as a result of the disorder. They should fight for bills
that will help curb the prevalence of sickle cell patients. There are
some states THAT DON’T HAVE EVEN ONE SICKLE-CELL CENTRE. Some
well-to-do families prevent their wards from attending the Sickle-cell
Centers and that should be discouraged. Professor Akiyanju is a fraud
and should be checked. He should provide beneficiaries of all the
donations made so far. As we approach World Sickle Cell day on 19th
June, I call on all state governors to wake up to the reality of this
scourge and do the needful. Corporate bodies like MTN should heed this
clarion call and understand that we sickle cell patients don’t need to
be handed fish, we need to be given opportunity to fish for ourselves.
Let them provide jobs for us. i also call on all the elected senators, Honourables Stella Oduah, Ekwunife Uche, excetera to include sickle cell issue in their policy deliberations. Sickle cell patients have really suffered a lot in this country and it is high time that changed’
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