•Disease is no death sentence – Olagoke, Consultant Family Health Physician
By Chioma Obinna
Every year, over 300,000 children are born with Sickle Cell Disease, SCD, and 70 per cent of the births occur in Sub Saharan Africa. Sadly, here in Nigeria, thousands of the infants die.
SCD, also known as Sickle Cell Anaemia, is a generic name for a group of inherited haemoglobin disorders characterised by the presence of sickle-shaped red blood cells which leads to illness and sometimes death. People with this order have atypical haemoglobin molecules called haemoglobin S, which can distort red blood cells into a sickle or crescent shape. Studies show that in Nigeria, one out of every four persons has sickle cell trait. Meanwhile, despite growing awareness on the existence, consequences, prevention and care of patients with the disorder, the country is far from eliminating the myths and misconceptions around SCD. Consequently, many Nigerians living with SCD have continued to suffer in silence while many face abuse and name-calling in the society. Worse still, several die out of frustration and inability to manage the disease. Last Tuesday, June 19, was the World Sickle Cell Day celebrated to create awareness on the disorder as well as encourage those living with it and intending couples to check their genotype before marriage. An SCD victim, who calls herself a Sickle Cell Warrior, shared her experience and coping skill with Sunday Vanguard.
Sickle cell warrior
“I am a warrior; I am a sickle cell warrior.” These were the words of Mrs Fasasi Olushola who has been living with Sickle Cell Disease, SCD, for over 31 years now.
Fasasi like every other Nigeria living with sickle cell suffered humiliation, discrimination, and all sorts just because she is living with a disease that is not a fault of hers. She was given different names – Ogbanje, witch, evil child and Alagbanomo – among others. No one seemed to understand her plight, apart from her mother, due to ignorance of the fact that her condition was an inherited disorder that was no fault of hers. Growing up like every other child in her neighbourhood was a challenge. Many of her mates refused to associate with her. They made a mockery of her. Even in school, where she expected to have an understanding of teachers, the situation was not different. Teachers and fellow students kept their distance from her.
Like Fasasi, many people living with SCD face difficulties in the society instead of being protected.
“When I was growing up, the thought of having sickle cell made me a distressed child because associating with other children was tough”, she narrated.
“There was a huge bridge between the society and sickle cell victims like me then. People saw you as a child possessed by evil spirits. They called you a witch. The Yoruba called us Alagbanomo when we were not,” she said with fright in her eyes.
“At school, teachers saw me as no good for any activity. I was segregated. Teachers used all kinds of unsavoury words to describe me. I was taken off several activities but God and my mother saw me through the challenges.
“My mother never gave up on me. She continued the race with me unto the end and I am going to live to take care of her. My father also did his best for me but my mother was the pillar that kept me going through the period of trial.
Fasasi, who is the first child in a family of four children, said she and the last born of her parents are sickle cell victims.
“My sister is also doing fine”, the victim added.
She pleaded with the society not to see people living with sickle cell as possessed children or evil spirits but give show sympathy and understanding to them. “We are special in our own way. We are brilliant, intelligent and there is nothing others can become that we cannot become. We have doctors, lawyers among people living with SCD and in other good professions.”
Secret of healthy living
Asked what has kept her going, she said: “I am alive and well today because my best therapy is water.
“I take water frequently to avoid dehydration. I keep warm in cold weather and I take my routine drugs such as prophylaxis and multivitamins like folic acids, B complex, etc.
Fasasi explained that she had mastered her body system and discovered everything about her condition, saying once a person living with SCD knows this, there is nothing he or she cannot do.
“Today, there is nothing out there that I cannot do. I am a special individual who has been blessed with two lovely children; so there is nothing you can do that I cannot”, she stated.
“My children’s genotype is AS because my husband is AA”.
Preparing for marriage
Fasasi gave insight into what she went through before her spouse agreed to marry her.
Her words: “Getting married was a challenge but everything in life is tied to God. When you leave everything to God, every single thing will be easy.
“I had to honestly tell my spouse about my health condition. I told him I am a Sickle Cell Warrior and not a sickler as people usually call us.
“He withdrew initially but because the love was there, he went to do research and also asked questions. After a while, he decided that he was ready to go on with the marriage; we were genuinely in love”.
She also pressed her husband to find out his his status before they proceeded with the marriage.
After a genotype testing, her spouse was AA which medical experts say is the best candidate for anybody living with SS.
Asked if she would have desperately married her spouse if he was AS or SS, she responded, “No. I wouldn’t have given my consent for the wedding.”
She advised fellow SCD victims not to lose hope as they are beautifully and wonderfully created by God.
SCD not a death sentence – Dr Olagoke
Speaking on the myths and misconceptions about SCD during an awareness seminar organised by the Federal Medical Centre, Ebute Metta to mark the World Sickle Cell Day held under the theme: “Sickle Cell Disease Awareness: Consolidating Our Gains”, a Consultant Family Health Physician at the hospital, Dr. Usman Olagoke, who stated that the disease was not a death sentence, said to reduce the disease among Nigerians, the country must demystify myths and misconceptions concerning it.
According to Olagoke, Nigeria needs a lot of awareness to effectively check ignorance about the disorder.
“Even today, there are people that still believe that SCD is from witchcraft and also ascribe other things to it. We need to eliminate all sorts of negative beliefs and then do a lot of awareness and counselling for people who do not know their genotype and tell them how it is being spread and how we can curtail it”, he said.
“And even when you have the disorder, we have to let people know how they can have a healthy living out of it.
“It is not a death sentence because once you have the disorder, you can live a life just like anyone else if you actually know yourself, what you need to do and what you need to avoid to protect yourself from trigger factors because we have many people living with sickle cell disorder that are professionals in different fields and well above 60 and are doing well.”
According to him, there is a need for intending couples to be aware of their genotype before marriage as the disease is an inherited disorder and the possibility of transferring it to their unborn child depends on their genotype.
“By the time we do all these checks and balance, we will reduce the number of sickle cell disorder in the country”, the consultant said.
But Olagoke raised the alarm that management of the disease was becoming costly for victims due to the economic situation of the country as well as frequent crisis and complications.
He regretted that although a significant number of people are coming out for treatment, the cost of healthcare as it concerns curative medications and procedures, especially bone marrow transplant, has become unnecessarily expensive.
“We are calling on government, non-governmental organizations and religious bodies to help in funding some of these things as well as research for SCD so that we can take care of people with the condition adequately,” the consultant added.
Disclosing that Nigeria still has a very high number of people with the disease, Olagoke said in FMC, Ebute Metta alone, there were over 600 people living with SCD and operating under the hospital’s Sickle Cell Club. Courtesy of the Club, members receive routine but expensive drugs for free while the hospital subsidises their charges by 50 per cent. For instance, whereas the admission fee in the hospital N10, 000, they pay half of it.