The emotional burden, challenges of living with sickle cell disease

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. He does not look like someone with the condition and he is also jovial. However, he has 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 would die. And he saw that she sold her jewellery and all 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 would study really hard, become jovial and always try to put a smile on his mother’s face….so that she would worry less about him.

He excelled in his studies and he could barely wait to graduate, 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 while receiving 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 while narrating 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, was 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 ancestries.

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 four to six million Nigerians, while over 150,000 children are born every year in Nigeria with SCD.

Unfortunately, 90 per cent of these children in low and middle-income countries with SCD will die before their fifth birthday. This is largely due to poor access to good quality healthcare 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 hospitalisations 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 hospitalisations 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. And no one will want to have children, only for nine out of 10 of them to die before the age of five. Psycho-social support should be introduced into routine medical services for persons affected with SCD as well as their families.

Conclusion: In commemoration of World Sickle Cell Disease Awareness Day (June 19th), we celebrate all survivors and their families (such as the numerous Babalolas and his loving mother) as true heroes and heroines. Prevention is better than cure – always.

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