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” I have been working with MAPOLY (Moshood Abiola Polytechnic,Abeokuta,) for a couple of years, but, today, I have my restrictions because of my health.
“There are things I would have loved to do that I won’t do again, so, it is not a matter of I have the money to take care of myself.
” It is a matter of the kind of restrictions you are going to give such a child. I would love to travel and see places but, there are things I can not easily do. Intending couples will not have to think of themselves, they would have to think of the restricted choices they are going to give their kids,” a 37-year-old Dotun Oladipupo, a lecturer at MAPOLY shared his excruciating experience as a sickle cell disease patient.
Dotun’s story revealed that, when the Sickle Cell Disease strikes, life turns to a hell. Ambitions get crippled. Millions of naira become wasted and the two lovebirds become enemies .
This is the summary of the plights of some people that are living with SCD in Nigeria and globally.
Many people both the patients and those who have them as family members or friends who spoke with PLATFORM TIMES regretted the conditions of the SCD subjects it’s victims to . Some patients blame their parents for ‘putting them into the avoidable situation”.
Sharing his experience as a patient of SCD who married at the age of 29 with one kid, Dotun advised his colleagues to accept their fates .
He said “The first thing is to accept who you are and begin to think on how to live on your health limitations.”
… The Dotun’ s Emotional Story
“First my mother is a retired health worker then secondly I think my father is the only man I have seen that has shown love to someone living with sickle cell as much as he does.
“As someone that runs NGO I have seen families that the man abandoned the wife with sickle cell kids and strangely too, I have seen the woman abandoned sickle cell kids with the husband but, in my own case I can say that my daddy is someone that once I am in pains he cries, so, I had this connection with my father, for the very first time I have seen a man who chose to love a child with sickle cell with all of his might, so, it is easier and my mother being a health worker feels like if he is sick we will treat him and he would get better and she tends to be the one perhaps with the stronger emotions when it comes to me but, my father is always probably afraid even when he sees my calls.
“So, to them I think they accepted earlier enough that they have made the mistake and they didn’t get to know on time and probably I have had two siblings before they got to know and they feel like they were lucky enough and let’s love this one, so, over the years they gave me freedom to do whatever I have to do, when I chose to do HND, he does not have a problem, when I chose to do B.Sc he supported me, when I chose to do M.Sc he supported me. That is what I will tell parents with Sickle Cell: whatever your children with sickle cell want to do, let’s do it and support them.
“Even my NGO started with my father, somebody that will work his life out and buy a supply of drugs for six months and I will share the drugs and in less than one month I will tell him my drugs have finished. At first I was doing it secretly but he got to a point that I had to tell him that I was distributing the drugs and he took it upon himself to buy me more because he knows I will have people I would want to give.
“While I was in school what I do is that I put my best at work, so, people don’t really know that I have sickle cell until I had the issues of my legs, I have been working with the school for couple of years all of those years even my HOD didn’t know that I had Sickle cell, I put all of my effort at work, I will not allow that because I am sickle cell, someone will now take that as an excuse to say I am not living up to expectation.
“I put in all of my best so, even as a sickle cell patient, once you are healthy, let people see that you are putting in all of your best so that when you are down, they will know that it is because he is down, once he is up he is putting in all of his best, so the best that you should, as a sickle cell, is to leave it at the back of your mind and enjoy life to the fullest.
“While I was growing up, there was this saying that sickle cell leaves you at the age of 21, that is not true.
“it is believed that at age 21, you need to take care of yourself, know what to do and not what to do and how to manage a crisis that was the cliché behind it.
“People who are younger than 21 years, are now able to cope with themselves, you can’t put a date or an age to sickle cell disease. Over those years, I have never been rushed to hospital, no matter how severe the crisis is.
“Since I was 16 years old, I always know, when I am going to have a crisis, how it will be. Sometimes, I will walk to the hospital myself and get there and be unable to work again. When you know yourself, you begin to find coping mechanisms.
“I drink alcohol with friends but I drink a lot of water after consumption of alcohol, it is my coping mechanism, because I know myself. People with SCD have to be conscious of themselves, know what works for you as a person”.
... I had Contemplated Committing Suicide -Olasanye, SCD patient
Another sickle cell patient, Blessing Olasanoye who was admitted at the FMC,Abeokuta spoke with PLATFORM TIMES on how she almost killed herself .
She said she had thought of killing herself due to the pains and challenges facing her.
She complained that she found it difficult and painful to live as a sickle cell disease patient .
Olasanoye blamed financial challenges, criticism, depression, pains as parts of the challenges she is facing.
However, she emphasized that the primary challenge she faces is lack of adequate financial support, lamenting that managing Sickle Cell Disease necessitates regular medical check-ups and medications.
In her word she said “yes, I am depressed, because anytime I think about it, the pain, like my bones hurting me , I fell like why, why am I the one, why is this happening, sometimes I feel like committing suicide, because there is nothing to take it away.
“Most of my friends are the one that support me, and my Mum and my Dad, those are the people that support me, because I met many people online and I don’t even hide about my carrier, I just say that I’m a sickle cell, so that Incase there is any crisis or problem, I will just walk up to them and I will say I need your help, and those that have it they were able to support.
“The main issue is the financial challenge, because sickle cell is not something you can be with without having financial assistance, you need a financial support for you to be able to go for your medical checkup, your medical drugs and you also need your family support, but, most of us lack the family support.”
Speaking further, she explained that, depression has also been a constant companion for her, as she goes through the pains and challenges of her condition, often lead her to contemplate suicide.
She however explained that by openly discussing her condition online, she has been able to reach out to friends and acquaintances during crises and request their assistance.
Recounting her toughest moment, Olasanoye said she experienced a harrowing experience in December 2022.
She said “last year December 2022, I have this one crisis, it started with just a little pain, from my chest, I was unable to breathe, I was unable to cough, or even take water, but because my parents did not just believe on this drugs first, they have to take some medical herbs, maybe it going to work, but, unfortunately it doesn’t work, so, I was then refered to a medical center to have some test. It wasn’t easy the way I’m explaining it, because the crisis was very tough, I was having all these pains all over my body, I can’t sleep, I can’t even lie down, even to stand up is a problem for me, I just have to straighten my body, do nothing, that was how I landed at FMC.”
The Johnson Family Shares Painful Experience Losing Son
Ritchie Johnson on the loss of her son, Chris, to a rare kidney cancer linked to sickle cell trait (SCT) said “when you lose your child, it’s real. It’s been 5 years for me. People will tell you time will heal, but it doesn’t really heal. You just learn how to cope.
“Chris was born with SCT, a genetic condition that occurs when a child inherits one sickle cell gene and one normal gene from the parents. When two sickle cell genes are inherited, the child is born with sickle cell disease (SCD), which can cause pain, acute chest syndrome, stroke, and other serious health problems. SCT is often seen as a less dangerous condition compared to SCD because people with SCT often do not experience the painful and life-threatening symptoms of SCD.
“After a newborn screening revealed Chris had SCT, the hospital provided little information on the condition. “I was told that SCT was nothing to worry about and that you could live a long, normal, and healthy life without any problems,” said Ritchie.
“Chris had an active childhood and played sports. He earned a football scholarship from the University of New Mexico. SCT never limited his lifestyle.”
….People’s Experiences About SCD
Tens of people who shared their experiences with PLATFORM TIMES blamed lack of awareness and ignorance.
Sharing her view, a female broadcaster, Salome Oladipupo said “What I can say is that, sickle cell shouldn’t be kept a secret either from family, friends or acquaintance because I believe it’s something that people are not 100 % percent aware of and it should be taken with levity.
“Before my cousin died during COVID-19 due to some ailment, she looked really healthy, she was fat and didn’t look like she was sickle cell, my cousins and I didn’t know she was sickle cell until the day she died.
“I believe if family members had known she was sickle cell more attention and care could have been given to her, because she had only her parents to tend to.
“I’d still say not every literate is aware of testing blood group before getting married, some who are aware always believe they will figure it out, not knowing that the pains the child/children will go through is UNEXPLAINABLE.
“Marraige is not a do or die affair, if a couple belong to AS it’s WISE to leave the relationship rather than spend your hard earned money on buying drugs , seeing your child in pain and eventually loosing the child to the cruel hands of death.”
A certified nurse , Thomas Abiodun while sharing her experience as a nurse at the Ogun State College of Health Technology, Ilese, Ijebu, lamented that most of the patients have become addicted to drugs.
She said “When I was still working at OSCOHTECH, I came across patients who have it and I realized they were usually suffering from joint pains and body pains.
” Some of them are already addicted to drugs especially Opioid analgesics. But, I tried as much as possible to assist them in reducing drug dependency by encouraging diversional therapy. I also health educated them on *Dietary modification.
” My advice is that people who are intending to go into a relationship should run laboratory investigations first most especially Genotype as it is important and one of the determinant factors of the future offsprings.
“AS, SS, AC, SC can only get married to partners whose genotype is AA to avoid birthing children whose genotype will make them suffer health challenges or early death due to complications.
” In Nursing, we health educate patients on their conditions, mode of prevention to avoid future occurrences, how to manage or live a normal life with it and the possible curative measures.”
A broadcast journalist , Maryam Ogunremi, said ” having adequate knowledge about what causes Sickle Cell Disease and the steps to avoid it will go a long way in making our lives and that of the unborn generation easier.
“I have heard about the crisis people living with Sickle Cell disease go through and how excruciating the pain can be for them and I always feel that no child should be allowed to go through such a condition.
“We should equip ourselves with adequate information and together, we can build a healthy nation and world.”
…. The Expert views
A consultant hematologist at Federal Medical Centre, Abeokuta, Dr Mrs. Olabisi Gbotosho described SCD as an inherited group of blood abnormality due to blood mutation in the gene that clots for red cell hemoglobin.
Speaking with PLATFORM TIMES on the knitty-gritty of SCD, Gnotosho said “what happens is that there is a substitution of a non-soluble protein for one that is soluble. For example, valine is substituted for Glutamic acid. Glutamic acid is a protein that is soluble while valine is not soluble. Due to this protein that is substituted in the red cell, it makes the whole hemoglobin no soluble in the blood.
“Hence, when the non-soluble protein gets in contact with oxygen, it becomes difficult for it to be soluble and be manable. Eventually, we have a polymerization of the red cells and then they lose their shapes irreversibly and they become sickle. When they become sickle, it becomes difficult to maintain the lamina flow in the vesicle, meaning the red blood cell flow in the body.
Therefore, they become stasis, what we mean by stasis is that they don’t have a free-flow, like a gutter that is full of dirt. Assuming that there are vessels in the body that this flow cannot reach, then we will have hypoxia — a situation where oxygen is not delivered to tissues — then there could be ischemia leading to death of cells.
“Eventually, there will be a situation whereby any small change in the physiology of the body will cause crisis and this crisis will come as pain, because the stasis, the clogging, the poor oxygenation of the tissues will lead to pain; the stasis will cause a residual build up of some substances in the body that can cause pain; destruction of red cells; there could be reduced production of red cells; these are things that cause the crises that we see.
“We call them hemolysis crises. Like we see jundis, yellowness of the red cells; yellowness of the palm; and then there’s pain. For instance, there’s a clogging of the vessels in the brain, then we talk of brain hypoxia. That is why we see some patients with features of stroke because some tissues in the brain are not well vascularized — not well oxygenated. This condition can affect every part of the body in as much as the vessels in any part of the body can be affected by the polymerized sickle cells that have lost the ability to be soluble.”
….Causes Of Sickle Cells
The consultant hematologist spoke on the causes, saying,there are genetic causes which, according to the expert, are the root causes. She also made mention of environmental factors that probably trigger the crisis.
According to Gnotosho,the genetic cause is when an individual has two genes — one inherited from the father and the other from the mother — that produce this type of hemoglobin.
If one has a mutated gene and the other that is not mutated, the genotype is AS; because the normal one will produce hemoglobin A while the other will produce hemoglobin S.
Speaking on the danger of two AS carriers marrying each other, she said “when we have two individuals that have this kind of mutation, as in AS, come together to marry, they have one in four chances; that is one in four chances in every conception, not, one in four children; of having an offspring that is SS.
“Now, when it is heterozygous, as in, you have A and you have A, it is not pronounced, because, the A that the hemoglobin produces will buffer, but when both are SS, that is when the crisis occurs.
“So, the cause of it is actually inheritance of a double gene of S from both parents.
…. Prevention And Complication
The consultant hematologist said the
Prevention and complications crises are environmental factors.
She explained further that the patients cannot withstand stress, saying, ” the globin train cannot withstand stress. Any little deviation form the normal — for instance, extremes of temperature, either heat or cold can precipitate their crisis — any other disease that may not be so pronounce in a person without it, could lead to crisis because their inherited hemoglobin trait get polymerized easily when in hypoxic condition.
“Even if we have individuals that have these inherited genes, when they are still nurtured, or allowed to go through stressful conditions, it’s possible that they don’t fall sick frequently.”
On the management of SCD, the expert said management of Sickle Cell anemia is multifactorial.
According to her, the reason is that it starts from the individual, the person that has the homozygous trait has to come to a realization that this is who I am and has to let people know that he or she is specifically different from other people around.
She said “for instance, there are some people that if their colleagues are going to the field to play football they cannot go; if there is a night club party where others are drinking alcohol and all that, they will not be able to go. So, it starts from individuals, when they access their conditions and are determined to manage themselves according to how it should be, then there wouldn’t be an issue.
“The second factor is the management is their immediate family’s understanding of their condition. It is possible the caregiver gets frustrated, but they have to understand that this is what this person is going through and then try to encourage them and yourself to give them what they need and what is required.
“Another thing is this stigmatisation which may tilt them to depression and develop psychological problems. The caregivers and the immediate families must be ready to shield them from this stigmatization. We have a lot of them that have gone into depression and because of this, they don’t want to relate with outsiders and don’t want to have a life to live. You see some of them that are so angry at their parents, they believe their parents are the source of their problems. We have seen instances that both parents do not know that they are SS; we have seen instances where wrong results were given when they go for counselling and phenotype tests.
… Advice To Intending Couples
Gbotosho urged the intending couples not to go into the union rather than to regret. It is psychologically draining, it is financially draining, and then socially it is not easy to cope with.
“My advice for intending couples is to think about it, and think about it very well, although during counseling, You don’t have any right to tell anybody not to marry, but let them know the implications, so, that is the rule.
We don’t have the right to tell couples or intending couples not to marry, but let them know the implication. So if they agree to go into the marriage and they think they will be able to cope with it, well that is good for them. But from our own hand, our own advice is that prevention is better than cure, It is better not to go into it than to go into it and regret.”
According to the Centre for Disease Control and Prevention, Sickle Cell Disease (SCD) is a group of inherited red blood cell disorders. Red blood cells
contain hemoglobin, a protein that carries oxygen. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body.”
PLATFORM TIMES gathered that people who have sickle cell trait (SCT) inherit a hemoglobin “S” gene from one parent and a normal gene (one that codes for hemoglobin “A”) from the other parent.
The patients, according to the findings, do not have any of the signs of the disease, but suffer a lot of complications when the person becomes dehydrated or exercises strenuously.
June 19, marks World Sickle Cell Day, observed annually to increase awareness and public understanding of the disease that the Centers for Disease Control and Prevention reports affects an estimated 100,000 Americans, including some of our favorite stars of past and present.
…Nigeria Is Capital Of Sickle Cell
PLATFORM TIMES obtained data from NDC which states that about 50 million people are living with SCD globally and Nigeria is the epicenter zone with about 4-6 million people living with the disease (1 in every 4 Nigerians has a sickle cell trait).
The statistics showed that annually, about 300,000 newly diagnosed SCD children are born worldwide. Sub-Saharan Africa contributes about 75% of the number . Nigeria accounts for 100,000-150,000 newborns living with SCD annually (33% of the global burden of SCD) .
“Therefore, Nigeria occupies a strategic position in the epidemiology of SCD from the global perspective. The prevalence of SCD within the states in Nigeria ranges from 1%-3%. Hb-SS is the predominant hemoglobin variant found in Nigeria while Hb-SC occurs sporadically, especially in the south-western Nigeria.
“SCD poses significant challenges to global population health. It contributes significantly to the morbidity and mortality of the pediatric and adult population. About 50%-90% of children born with SCD in low- and low-middle-income countries of sub-Saharan Africa die before their fifth birthday .
“It accounts for 20% of neonatal mortality and 5% of mortality of under-5 children in the African continent. It is contributory to several obstetric complications and high maternal mortality rates of women of child-bearing age living with SCD in the region..
As at October, 2021, the investigators found an expected high child mortality rate of sickle cell disease in Nigeria (estimated national average under-5 mortality for children with sickle cell disease born between 2003 and 2013 was 490 per 1000 live births.
Sickle cell disease (SCD) affects millions of people throughout the world and is particularly common among those whose ancestors came from sub-Saharan Africa; Spanish-speaking regions in the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy.
…Complications Over Acute Chest Syndrome
According to the CDC, people with sickle cell disease (SCD) start to have signs of the disease during the first year of life, usually around 5 months of age. Symptoms and complications of SCD are different for each person and can range from mild to severe. People with SCD can experience different complications, but some of the common ones are listed below.
Acute chest syndrome (ACS) is a life-threatening complication in people living with SCD that can result in lung injury, breathing difficulty, and low oxygen to the rest of the body. ACS may occur when sickled cells block blood and oxygen from reaching the lungs or may be caused by a viral or bacterial infection. In children, ACS is usually caused by an infection.
ACS is a medical emergency and should be treated in the hospital right away. Signs and symptoms are similar to pneumonia and can include:
…10 Nigerian Celebrities Who Are Sickle Cell Patients
Nigerian celebrities who are sickle cell have become an inspiration to a lot of people going through the same situation out there. Sickle cell anemia is a disease that a lot of people are becoming aware of day by day.
While Nigeria has numerous celebrities, there are a few who have come out to make it known that they are sickle cell.
Adekunle Gold
The ace singer made the shocking revelation this year and fans home and abroad fell in love with him more. Adekunle Gold during his revelation gave thanks to God for giving him another chance to live irrespective of the number of sickle cell crisis that he has had over the years.
Laycon
The Big Brother Naija season six winner made the revelation that he is sickle cell while he was in the BBNaija lockdown house. It is no news that he supports and gives freely when it comes to cases that are sickle cell related. Laycon won the hearts of Nigerians for his tenacity and drive to make it in life irrespective of his genotype and today, he made it. Laycon is one of the Nigerian celebrities who are sickle cell.
Bukola Bolarinwa
Nigerian lawyer, Advocate, president of the Sickle Cell Aid Foundation (SCAF) and founder of Haima Health Initiative is one amazon living with sickle cell. Bukola stated that she knows the psychological, mental, financial and emotion burden people living with sickle cell go through; hence her fight to help people become more aware of this disease and how it can be handled.
Living with sickle cell disease can be a challenge. But there are steps you can take to live the healthiest life possible. Click on one of the tip sheets below to get started
CONTRIBUTORS:
Israel Adeleke , Ridwan Oliyide , Funked Adeyosoye , Sodiq Mojibola &Fawaz Adebisi
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