By Angela Onwuzoo
Nigeria has the highest burden of Sickle Cell Disease in the world and is also the top sickle cell endemic country in Africa.
Statistics show that over 40 million Nigerians are carriers of sickle cell gene as over 150,000 babies are born each year with sickle cell anaemia in the country.
Though scientific discoveries are helping to manage the disease better, people grappling with the disorder usually suffer severe pain and crisis.
Episodes of painful crisis have been reported to be triggered by environmental and psychological factors. These predisposing factors experts say, include stress, dehydration, travelling at high altitude, exposure to extreme temperature (cold or hot), and all forms of infections, make individuals with sickle cell anaemia susceptible to crisis.
Sickle cell anemia, experts say is an inherited form of anemia — a condition in which there are not enough healthy red blood cells to carry adequate oxygen throughout the body.
Scientists are yet to discover an easy method for the cure of sickle cell disease, except the bone marrow transplant which is extremely risky.
Many of those living with the disease in Nigeria say they are trying to overcome some of the crisis associated with the condition despite all odds.
But others are particularly not happy about what they described as stigmatizing attitude of the society towards them, thereby making it more difficult and stressful battling the condition.
For them, though coping with sickle cell disease is a big but surmountable experience, the issue of stigmatisation must be checked by the government to enable more sufferers survive the condition.
According to them, many around them thought they would not survive into adulthood, a development, which they say is a common observation among children with SCD born and raised in Nigeria.
Speaking with our correspondent, some of them revealed that stigmatisation was worsening their condition, urging the government to come to their rescue.
A 45-year-old businessman who simply identified himself as Emmanuel, told The Point that though he thanked God for sparing his life, “living with sickle cell anaemia I must say, is not easy because of the way some people treat us. Living with the condition is fully of challenges and overcoming stigmatisation and discrimination on daily basis is by the grace of God”, he said.
Sharing his experience with our correspondent, Emmanuel who sells electronics at the popular Idumota market in Lagos Island, said that some of his business associates often looked at him with pity despite the fact that he was doing well in his business.
His words: “Sometimes, when I have influx of customers, some of my neighbours will come and tell me; Emmy take it easy o! You know your condition. Must they always remind me of my condition? I find this attitude rather disturbing.
“And when I tried correcting them, they say worse things like, hope you will live to enjoy all the money that you are making.”
He noted that those who assumed that sufferers were weak and incapable of being great, held very wrong notion about them.
Emmanuel, however, said that the stigma he was suffering at the place of business did not start that day, revealing that his childhood was laced with suffering from the condition amidst poverty and the associated discrimination.
“In my primary school days, my classmates gave me a derogatory name because I was always in and out of the hospital as a result of crisis”, he said
The businessman who is happily married with two kids said, “stigmatisation is one of the cardinal things to fight when it comes to the scourge of SCD in the country.”
Also lamenting, a father of four and secondary school teacher, who prefered to be called Mr Peace, said people reeled all kinds of insult on him for giving birth to a child with sickle cell disorder.
“ Some people often told me that my wife and I are selfish for bringing a child into this world to suffer all in the name of love. It is so unfair to talk to us in such a manner for crying out loud! Some of us with sickle cell gene got married out of ignorance. Often times, people looked down on my seven year-old son and say a lot of negative things about him. Some were even bold enough to tell me that he will not survive into adulthood. But they are not his God. Some of these comments are even more torturing than the disease.” he said.
Despite all the negative perceptions about his son, Peace said his son was healthy and also doing well in school.
He further said: “My son is seven and he is very intelligent ( best student in his class) he wants to be a doctor when he grows up. He has dreams. My wife and I are solidly behind him in any decision he takes. He takes his medications daily,(oraciline antibiotic that helps to fight against bacteria and folic acid that helps to produce red blood cells.) No one knows he has sickle cell because he looks healthier than my other children who do not have sickle cell. I’m so blessed and happy to have him as my child”, he said.
A mother of four who pleaded anonymity said it was unfortunate for people to discriminate against those living with sickle cell disorder to the point of describing the condition as a curse, including the educated ones who ordinarily should know more.
According to her, “This is really sad. My husband is a sickle cell warrior who is over the age of 40, a Chartered Accountant privileged to get married and have beautiful children. There is so much discrimination in Nigeria as regards sickle cell disorder. its rather unfortunate that people still see sickle cell disease as a curse or death sentence.”
During last year’s World Sickle Cell Day commemoration, a professor of genetics, Cyril Otoikhian, who was a guest on a television programme described the condition as a curse, adding that investing in sufferers was a waste of resources. Many SCD survivors described such a stigmatising comment as rather shameful especially coming from a professor.
However, a new report published in Blood, the Journal of the American Society of Hematology, showed that some people with mildly symptomatic sickle cell disorder may live long with proper management of the disease, including strong family support and strict adherence to medication and appointments.
Narrating his experience, a foremost film producer, Mr Wale Fanu, who has lived with the disease for 69 years, told our correspondent that sickle cell is not a death sentence, urging those facing discrimination to look into the future with hope and courage.
He said: “In my own case, I and my mother were asked to go to Zaria to do blood test and bring back the result to Lagos. It was after then that one of the doctors told my mother that my condition was sickle cell. He told her that most people who had this type of genetic problem usually died around 20 to 21 years of age. But to the glory of God, I am still here today.”
Speaking on the burden of sickle cell disease in Nigeria and its associated challenges, a Specialist Physician and Clinical Haematologist at the Lagos University Teaching Hospital, Prof. Michael Kehinde, blamed the burden of SCD on parents who failed to verify their genotype before they got married.
“People should know their genotype long before they get married and not just before or after marriage, because once they are about to settle down, there is little that can be done again to change their perception”, he said.
Stressing the need for more awareness creation to tackle the problem of stigma and discrimination, a Consultant Family Physician at the Federal Medical Centre, Ebute Metta, Lagos, Dr. Usman Olagoke, said: “Information is also key in reducing the number of people with SCD. When AA marries AA, all their children will be AA.
“If AA marries AS, there is 50 percent chance that a child will be AA and 50 percent chance that a child will be AS. When AS marries AS, there is 50 percent chance the child will be AS, 25 percent chance the child will be AA and 25 percent chance the child will be SS”, he said.
Charting the way forward, the sickle cell survivors charged the government to provide adequate infrastructure and funding for treatment to improve lives of people living with the blood disorder.
Besides investing more funding in research for sickle cell , they also called for increased awareness to address the significant levels of negative attitude by students towards sickle cell anaemia. The survivors assured that though sickle cell disease could be a challenging condition in developing countries like Nigeria, efforts to reduce the additional burden engendered by stigma would be in the interest of affected children. Others want the government to develop effective anti-stigma interventions in secondary schools in the country.
