Ms Toyin Adeshola, Founder, Sickle Cell Advocacy and Management
Initiative (SAMI), has advised people suffering from Sickle Cell
Disorder (SCD) to live beyond their condition and live a fulfilled life.
Sickle Cell |
Adeshola, also the Chairman, Coalition of Sickle Cell
Non-Governmental Organisations in Nigeria, gave the advice in an
interview with the News Agency of Nigeria (NAN) on Saturday in Lagos.
She noted that many people suffering from SCD limited themselves and
deliberatly refused to live life to the fullest because they felt they
would die anyway.
“Sickle Cell Anaemia is an inherited form of anaemia – a condition in
which there is not enough healthy red blood cells to carry adequate
oxygen throughout the body.
“I realise that there are a lot of ignorance in Nigeria about SCD, especially among people suffering from the condition.
“I have been living with SCD for over 50 years (I’m 54 now) of my
life and I would not have had a chance at living; painful though it
might have been, but it has been a good life, even with sickle cell
disorder.
“I decided to launch the initiative in 2005 so I can be an
advocate and help people with sickle cell know that they can live beyond
their condition rather than allow the disorder control or limit their
lives.
“Many of them limit themselves and deliberatly refuse to live life to
the fullest because they feel they will die anyway. Even some parents
and relatives are ignorant of how to help manage the condition, ” she
said.
According to Adeshola, being a carrier of the ‘SS’ genotype is not a
death sentence, with adequate management and positive mindset.
“Nobody is born by accident, there is actually a purpose for your
life, live your dream make the best of it and stop holding on to
bitterness and negative thoughts, it doesn’t help or move your life
forward.
“The fact that you are a carrier of ‘SS’ genotype is not the end of
the world, learn to manage your disorder and health with a positive
mindset.
“There are people with the disorder in the police force, some are
playing soccer and doing all sorts. But if you allow your condition to
dictate your life, you will never amount to anything.
“Live your life, go for regular checkups, eat balanced diets, have
adequate bed rests and adopt sound hygienic practices, so as to enable
you manage the disorder effectively and live longer,” she added.
Adeshola also urged intending couples to go for medical test to
confirm their genotype before marriage to rule out the possibility of
having a child with SCD and avoid financial, emotional, physical and
psychological pressure that came with the disorder.
“SCD creates conflict in marriage because parents and relatives are
worried about the child’s health, the financial burden and a whole lot
of challenges involved.
“Many parents tell their children that they have a particular
genotype, may be ‘AA’, and these children grow up holding on to their
parent’s words that they are AA, without doing the test again to be
sure.
“Most times, when they get married they will now realise that they were given a wrong genotype all along.
“This is why you need to do the test more than once to ascertain your right genotype,” she said.
Adeshola called on the Federal Government to tackle sickle cell disease seriously like other life-threatening diseases.
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