Case I: Babalola is a brilliant 23-year-old 500L student of Chemical Engineering. His academic
brilliance is not in any doubt and he is comfortably in good standing to graduate with a first
class…..the first ever in the history of his department. He is loved by everyone, as he is always
cheerful and full of life. But what many were not aware of, was that his hemoglobin genotype is SS
and he frequently suffers from painful bone crises. Because he does not look like someone with the
condition and he is so jovial. However, he had been bearing his pain silently while putting on a bold
face.
Growing up as an orphan and the only child of his mother, she had sacrificed her all to send him to
school and she saw how fearful and miserable she always was, whenever he was ill as a child. She
lived in daily fear that he will die. And he saw that she sold her jewelry and all her valuables to keep
him healthy and to ensure he had a good future. Thus, he made up his mind from very early in life
that he will study really hard, become jovial and always try to put a smile on his mother’s face….so
that she will worry less about him. He excelled in his studies and he could barely wait to graduate
(first class), secure a good job and finally make his mother comfortable as reward for her long years
of sacrifice. He pictured her radiant face on his graduation day, as he would be beaming with smiles
as he received his degree from the Vice Chancellor.
And then he received a phone call that his mother had been hit by a drunk driver and she had not
made it alive to the hospital. And his carefully constructed world, held in place by his mother, came
crashing down around him. He was inconsolable as he cried his eyes out as he narrated his story. The
long days of painful bone crisis – excruciating pain that simply refused to go away, his mother
hovering around him like an angel…..now gone forever. Everyone around him, as he sat on the floor,
were moved to tears.
Introduction
Sickle cell disease (SCD) is a debilitating disease that affects the quality of life of the sufferers and
people around them. It is a major public health concern that is most prevalent among those with
African, Indian, South American and Mediterranean ancestry. Nigeria has the highest number of
people living with SCD globally, with a total of about 50 million people carrying the traits. The
number of those living with the disease is about 4 to 6 million Nigerians, while over 150,000 children
are born every year in Nigeria, with SCD. Unfortunately, 90% of these children in low and middle-
income countries with SCD will die before their 5 th birthday. This is largely due to poor access to good
quality health care services.
Burden of Care
The affected children and their families suffer a lot as a result of the SCD. They frequently go through
very painful bone crises, anemia – needing blood transfusions. They may also suffer stroke, visual
problems, bone complications leading to difficulties walking and so on. Parents also end up
exhausted physically and may also develop complications such as high blood pressure from the
frequent worries and difficulties. They may also be wracked by guilt and wishing they had either not
married or not had the child who is suffering so much due to their actions or inactions. Sometimes,
the emotional reactions may place a strain on the marriage and other siblings may sometimes feel
resentment for the extra care the affected sibling is receiving. The financial burden from frequent
hospitalizations and treatment is also a huge source of challenge for many parents. Emotional challenges include stigma and discrimination, exhaustion, frustration and irritability on
account of the chronic pain and sometimes, depression. Others may have bouts of anxiety or turn to
drug abuse to self-medicate the pain away. As a result of constant hospitalizations and medications
for pain, some may develop drug addiction.
What can we do?
Prevention is best. Pre-marital counselling and genotype testing should become widespread and
normal. That we are still giving birth to about 150,000 children with the disease every year is a
failure of preventive steps. No one will want to have children, only for 9 out of 10 of them to
possibly die before the age of 5 years. Psycho-social support should be introduced into routine
medical services for persons affected with SCD as well as their families. We must salute the courage
and resilience of all those who are living with SCD and their families as they strive to live healthy
lives. There is hope for a better future with improved health care services and better quality of life.
Hang in there.
Dr Jibril Abdulmalik
Tribune Article for the column “Your Mental Health & You”
Thursday, 30th November 2023
Asido Foundation
www.asidofoundation.com
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