A non-governmental organisation (NGO), Crimsonbow Sickle Cell Initiative will tomorrow in Lagos organise a programme on sickle cell prevention and management.
Titled “Project Keep a Warrior Warm”, it is a medical outreach for educating the less-privileged
At the event, which holds at Alimosho Local Government Area, participants would get free genotype testing.
Also, on August 12, at the same venue, the group plans to provide free medical counselling talk on sickle cell. The NGO will also give free medication, sweaters and water bottles to all children with Sickle Cell Disorder (SCD).
The NGO’s Chief Executive Officer/Co-founder, Timi Edwin, said a party had been planned for children who will also be given free packs and bags. Adults with CSD will also get free medical counselling. Earlier, the NGO had organised the first phase of the programme at Agege Local Government.
The Jennifer Okorie Foundation has begun a nationwide outreach on genotype education to sensitise pupils on the essence of knowing their genotype and the consequences of ignorance.
The campaign began in Ebonyi State, where the foundation in collaboration with the Ministry of Education gathered over 300 pupils from more than 31 secondary schools for the programme, which had as theme “Genotype Before Yes”.
The event organised to mark this year’s World Sickle Cell Day held at the Ebonyi State Women Development Centre.
Resource persons counselled the pupils to know their genotype before accepting any relationship proposal.
Prominent on the list of resource persons were Aisha Edward, the National Coordinator of Association of Persons Living with Sickle Cell Disorder, who said knowing their genotype before marriage, would reduce the number of children born with sickle cell.
In her remark, Jennifer Nkiruka Okorie, CEO and founder of the Foundation, said it was her desire to see that every African child achieves her goals and dreams in life.
Governor David Umahi, represented by the Commissioner of Education, Prof John Eke, thanked the foundation for choosing to kick off the campaign in the state.
Ekeh noted that the governor would be glad to partner the foundation to ensure that the message cuts across the society.
Track Media Enterprise, the management company for the project, would run the campaign until June, with possibility of an next extension depending on the level of success attained.
Highlights of the event was the presentation of Jennifer Okorie Humanitarian Service Award to Aisha Edward, Sen. Sam Egwu, Mrs. Rachel Umahi, wife of the Ebonyi State Governor and others that have contributed immensely in the fight against sickle cell anaemia in the country.
The Federal Medical Centre in Ebute-Meta, Lagos, has called on those yet to know their genotype to avail themselves of the hospital’s services.
By doing so, the hospital said a significant reduction in people living with the Sickle Cell Disorder (SCD) will be recorded. According to the centre, one out of every four Nigerians has sickle cell trait.
According to the Acting Medical Director, Dr Olubukola Aseru, over 300, 000 children are born annually with SCD, and 70 per cent of these births happen in Sub-Sahara Africa.
He said: “Nigeria by virtue of its population stands out as the most affected country in Africa with annual infant deaths of 100, 000, representing eight per cent of infant mortality. One out of four Nigerians has sickle cell trait; therefore, people need to be sensitised about the existence, consequences, prevention and care of SCD. The first step is to undergo genotype screening, and abide by medical counsel of the results.”
Describing the condition, he said Sickle cell disease is a group of disorders, which affect hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. Haemoglobin is a protein in the red blood cells that carries oxygen throughout the body. People with this disorder have atypical hemoglobin molecules called haemoglobin S, which can distort red blood cells into a sickle or crescent shape.
Going by this year’s theme: “Sickle cell disease-importance of comprehensive management”, Dr Aseru said the hospital conducted free genotype screening of pupils and interested persons through the hospital’s Sickle Cell Disease project office. “When results are given and are SS (HbSS and HbSc) there will be a need for a comprehensive management of the disorder. This holistic approach goes beyond treating the biological and physical manifestations of the disease such as crises and complications, but also encompasses strategies aimed at reducing the prevalence and burden of the disorder and putting into consideration the psychosocial and economic impacts on the person, the caregivers, the family and the society as a whole,” he explained.
The centre’s Consultant Family Physician, Dr Usman Olagoke said the SCD Project office opens from 8:00am to 4:00pm, every week day andnon-governmental organisations can assist people with SCD because home care and hospital care of those living with SCD have become increasingly complex and expensive.
“These people need help in the area of subsidising their medical expenses, equip healthcare facilities, rehabilitation and reintegration of SCD patients, who have had irreversible complications, promote research works on SCD, and get involved in the awareness drive and vocational training,” he said.
Sickle cell survivor and winner of the Marine Platform Prize for Writing in Northern Nigeria, Samira Sanusi tells Yetunde Oladeinde about her struggle against the disorder, second chance to live and her foundation for people living with the condition.
SAMIRA SANUSI is one of the winners of the Marine Platform Prize for Writing in Northern Nigeria. Her book, S is for Survivor, is an account of her ordeal with Sickle cell, fighting against the odds and giving hope to others.
To survive, she had to go through 28 major and minor surgeries, spend six years on wheelchair and undergo thousands of physiotherapy.
What was your experience like and what kept you going?
I lived a lonely and restricted childhood due to constant painful crisis, monthly hospital admissions, missed school days, countless rules and regulations, and limits to how much I played, where I played, what I did during which weather/season, which sweets and treats I enjoyed, and what parts of life I was able to participate in.
This pushed me into my own world, where I eventually found books and later developed interest in writing. In 2003, I had the most painful and strangest crisis. It escalated from the usual week of pain to months of being bedridden in the hospital. I stopped walking and couldn’t move an inch without sedation. At 15, life as I knew it ended.
Plans for me turned from preparing to start SS2 (Grade 11), to wondering how everything changed in the blink of an eye. Up was now down, and in became out. I didn’t understand my pain, or body, or its refusal to every medication, treatment, therapy and surgery it received. After several months in four different hospitals around Nigeria, I was taken to another in Jeddah, Saudi Arabia, where after three months, they said my legs needed to be amputated and I belonged at home, not a hospital. It was code for “there’s nothing more we can do for you”.
But my amazing father refused to let go, and literally searched for a doctor, a hospital, a country and a cure that could save my life and give me a second chance. So Vienna, Austria became my next destination. What at first seemed like a 2-week medical trip to seek treatment turned into 7 years away from home, 28 major and minor surgeries, 6 years on the wheelchair, undergoing physio, hydro, ergo and other therapies to get my mobility back; chemotherapy, a Bone Marrow Transplant, which was successful after 2 rejection scares, a half facial paralysis, a story to tell and PTSD to testify.
There were days when I lost my smile, my sanity, hope and faith; and nights when I thought I couldn’t or didn’t want to make it. But I’m glad I did.
Being cured of Sickle Cell Disease has been amazing and the best second chance I could ever get. There’s no better way to live fully and show gratitude than to dedicate my life to spreading awareness on how to avoid more Sickle Cell births, and giving hope, support and love to the warriors who are born to fight and known to win.
Battling the disease with her sister
My sister and I, as survivors, support each other by being a shoulder to each other. Together, we work towards enlightening people and providing aid for other warriors.
Reaching out to people with Sickle Cell
Samira Sanusi Sickle Cell Foundation reaches out to Sickle Cell Warriors by identifying Sickle Cell clinics that provide and manage these warriors. Hospitals and out-patient clinics play the most important role in the lives and management of those living with SCD, while organisations like ours provide support groups, counseling and financial aids to ensure that they receive standard healthcare. We also identify people living with Sickle Cell Anaemia through media awareness programs that include radio and TV sensitisation talks, which not only enlighten people about prevention but also provides a bridge to warriors interested in reaching out for help and support.
Challenges
Our challenges include funding or resources to provide for our beneficiaries. For every aid offered, there’s a lot more needed to be done. We rely on donations from individuals and organisations to provide free medication, support system, hospitalisation bills and funding for surgical interventions needed to improve beneficiaries’ wellbeing and quality of life.
Memorable moments
Some of our memorable moments have come in subtle but profound ways, such as when lives we have impacted on start to thrive on their own without needing as much support. It is heartwarming to hear news like Collins being able to resume school due to our donations, or Mussadat getting another chance at life after receiving funding for two successful hip replacement surgeries. Most of all, the ability to be there for another person, give them hope, courage, inspiration is amazing.
Advise to people living with Sickle Cell
Fight back and harder. Every day of our lives is a battlefield, and there are days when we don’t have anything left to give or the strength and courage to hold on. However, this is your fight and your story is yours to tell.
Is government doing enough?
The government has made efforts to ensure the prevention and control of Sickle Cell Disease. One example is the Kaduna State Government, which passed a bill that required couples to undergo thorough medical screening before getting married. We hope that more states will adopt this bill or provide resources that would sensitise, enlighten and counsel people to make informed decisions. We are also advocating for better healthcare services and management of Sickle Cell crisis and complications to enable warriors live a richer life with less health constraints.
Turning point
My turning point was looking back at the amount of surgeries, years spent fighting, the treatments, thousands of physiotherapy sessions, all that I had lost and gained and deciding that something has got to give! I needed to overcome and transform my past into something that finally sees the purpose of all the pain.
Cases that inspire you
Some of the cases that have inspired me are those of warriors who had all the odds against them but stood strong. When I met Musaddat, he had lost the ability to walk and his life was at a standstill. He reminded me of the six years I spent on wheelchair and being told I wouldn’t walk again. Today Musaddat walks better than I do without any support. Most importantly, he has his life back, with endless opportunities. Cases like his inspire me because he was a young man with hopes, goals, dreams and aspirations – and he almost lost it all. His fighting spirit, stubbornness and determination to fight till the end is something I can relate to.
With Nigeria carrying the burden of African country with the highest annual sickle cell death rate of 100,000, a huge chunk of them children under five; the disorder definitely deserves a renewed attention and combat; Adeola Ogunlade, who spent time with two young people living with the disorder, relives their stories of despair, battle for survival and hope.
ABAYOMI Oyelami, ‘We don’t need pity’
32-year-old Abayomi Oyelami’s life is one of inspiration despite the sickle cell cross he has to carry. A graduate of Bio-Chemistry, Oyelami teaches at Dayfield High School, not too far from his home in Agege. As he trekked to school on this day, this reporter, who had met him at home as early as 5.30 in the morning, noticed his limp; but he explained it away as one of the challenges of his situation.
“I have a leg ulcer. It is peculiar with people living with the disorder. My skin is very sensitive and any little wound, if not well attended to, could develop into ulcer.”
His situation is made worse by a motorcycle accident he had on his way to his former place of work, which affected his hip. “The nurse who was treating me died last year; if not, the bones would have been placed back in its normal position.”
Because of his situation, Oyelami could not stand straight for long, but his passion for his job was unmistakable. For some reasons, he chose this occasion to reveal his health status to his class of about 15, and for a moment, they went quiet in shock.
To renew their hope and get the class going, he quickly added that Sickle Cell Anaemia is not a death sentence and that people suffering from the disease can live a normal life. He explained though that couples with the AS-AS genes should not contemplate marriage, as it could be hell on earth for their children; and for them too, as there is hardly any parent who’d like to see their children go through the pain the sickle cell disease put their sufferers through.
Nonetheless, the pupils have positive stories to tell about their teacher. Tinubu Esther, who admitted noticing Oyelami’s yellowish eyes and the fact that he looks different, said, “We enjoy his class because he teaches well.”
Afred Oseh said “Our teacher is good but I’ve noticed that he is sometimes weak and has to lean on something;” while Mercy Kisusa confessed that “His movement and the injury on his leg makes me worry. He also does not like stressing himself in class, but give it to him, he is good at his job.”
His school principal, Mr. Gbenga Adeniyi said he wasn’t aware of Oyelami’s condition when he was employed, although he has noticed that he goes for medical check-up once a month.” The school also has another teacher, a victim of an accident, who also goes for regular check-up, hence, Oyelami’s case is not out of place.
Besides, Adeniyi said the young man is up to the task. “He prepares his lesson notes regularly and teaches the children well.”
Oyelami said his parents did not realise his SS status until he was about 5, when he ” was always falling ill and my parents were concerned.”
One scenario he cannot forget was when, in Primary Six, his dad had to carry him on his back to school to write his exams.
In JSS I, he missed classes, which temporarily affected his grades, but he quickly bounced back and still emerged overall best that academic year.
Growing up
“Growing up was tough, but you tend to know more about yourself, as you grow up. I never had any form of stigma issue. My strength actually drew friends closer to me. I did all the playing during the day and in the night, I felt the pain. I also played street soccer.”
As a first child, he did home chores, but his parents stopped him at a point. “I stopped fetching water because we were living in a three story building at that time, but I ironed my cloths. My mother still helps me to wash my clothes though.”
Yet, Oyelami would love to be a role model to his younger ones. “I am not lazy; they know I’m strong and courageous and trying my best.”
His LAUTECH days
“My survival strategy in the university was to have friends in different departments. Daddy retired from civil service when I was in 200 level, so I had financial issues and had to rough it through. The only thing that brought my mother from Lagos was when I fell ill at 400 level. My exams were near and the social worker taking care of me requested to see my mother. She paid my bill and even supported me in paying my last school fee. Managing his crisis
“Wherever I go, I always have a doctor friend. I once had to go through blood transfusion. I had travelled to ljebu-Ode to meet with one of my cousins but had serious crisis and was admitted to the university hospital. It was the longest time I’ve spent in a hospital.”
He is thus of the opinion that more education needs to be put out there, to prevent people, who out of cheer ignorance or sentiment, still get married to the wrong genotype partners.
“Sometimes, I ask singles how they would feel to see their child/children rolling on the floor for days in pain. Sometimes, SS children could curse their parents for bringing them to the world to suffer such pain.” He reasoned.
Oyelami is an avid writer, passionate about Africa. He has a book about kids in Africa, which he published with his NYSC year’s savings.
“I have approached the Lagos State Ministry of Education to get the book into schools, and I’m optimistic of a positive response.”
He is a young man full of ambition and like Myles Monroe, wants to die empty.
Temidayo Oredola, ‘I lost a brother to sickle cell’
Temidayo Oredola made a first-class in Mass Communications from the University of Ghana and currently works as a journalist with one of Nigeria’s national dailies. She was born with the sickle cell disorder 30 years ago in the former Gold Coast and has had to struggle with the pain all his life.
Oredola is the eldest of three siblings; two of whom turned out to be sickle cell carriers. “At a tender age, my younger brother, who died three years ago, and I were diagnosed of sickle cell disorder, following incessant illness and exhibition of symptoms of the disorder.” She reflected.
Her parents were aware of the danger of their union but went ahead, she revealed.
Curiously, she was initially diagnosed as an AS , but after continually exhibiting the symptoms, her parents were forced to put her through another test, which revealed her true genotype.
Growing up
“As a young girl in Ghana, I was very active and expressive. Mother was there to guide and support us. I played in the rain with friends, though not to the extreme. Usually I’d have pains all over thereafter. My close friends would always remind me of my health conditions, but I turned them down because I just wanted to play and have fun.
“Sometimes, we would be taken from school to the hospital. Our parents were very vigilant and as borders, we had call cards to call home whenever crisis set in because secondary school was located in Ashanti Region, about 10 hours’ drive from home. Our parents paid for special food to be prepared for us; yet I was not satisfied and still sneaked out of school to nearby restaurants for normal food whenever I had money.”
One incident that however made her sick and lose hope was when her 25-year-old brother doing his masters died at 25.
Coping as a journalist Coping as a journalist is a big but surmountable task, she said. “I work on the Health Desk and I go out to report events like every other journalist. Sometimes, I do my stories on the road to the office to beat deadline and many of my colleagues didn’t know of my SS status until much later. My editor who understands my situation is however, always there to help.
While living with her mom in Kwara State, she had a special room, but that luxury is lacking in Lagos, she revealed. “When I’m in pains, I sometimes need to put bandages on my hands. I also make frequent movements on the bed, which affect my sleep. Most times, the pains I have affect my hands and legs. I don’t move when I have pains and I use hot water with towel. I need the heat to make the blood flow. The pain killers also help. An SS can spend 3 to 4 days in the hospital when the crises has gone beyond what an individual can manage.”
“Most times, during my menstrual cycle, I have serious pain. But since I began to uses Ozeza seed or Iyere, the pain has reduced. The only time I feel pain is when I don’t eat well. I want to live a normal life regardless of my situation. I can do any home chores. My mummy tells us that in life, there is nothing we cannot do. I even hawked up to my 200 level. I also assist my aunt, who is into catering. I left home when I was 14 years, so I can manage all on my own. Dad left us when I was 16 to marry another woman and that has taught me a lot of independence. As first aid, I always have paracetamol and folic acid in my bag.”
‘Bone Marrow Transplant remains the only permanent cure’
Consultant haematologist and stem cell transplant physician at the Lagos University Teaching Hospital, (LUTH), Idi-Araba, Lagos, Dr Olushola Olowoselu provides an in-depth perspective into the sickle cell scourge.
Early signs and symptoms
Sickle Cell Anaemia was formerly thought to be “Ogbanje” or “Abiku” traditionally in Nigeria until its biological basis was revealed. Sickle Cell Anaemia, which is prevalent in Africa, is an inherited haemoglobin disorder that is characterised by homozygosity of haemoglobin S (HbSS). Hence, individuals with these homozygote HbSS genes are popularly referred to as “SS.” This disease arises when an individual inherits the abnormal haemoglobin S (HbS) gene from both parents. However, there is a group of individuals who are referred to as carriers of the sickle cell trait by virtue of inheritance of haemoglobin S gene from one parent. Carriers of the sickle cell trait do not present with clinical features –commonly called crisis that are associated with the disease.
The hereditary nature of the disease makes it present at birth, even though the onset only becomes evident 5 – 6 months later. Swelling of the hand, especially around the wrist, is the initial sign that is usually observed; then painful crisis episodes set in as aging occurs. Low blood level and yellowness of the eyes are also common features. Some individuals with Sickle Cell Anaemia develop acute chest syndrome, stroke, or painful penis erection at puberty. Parents should look out for the early signs, to seek appropriate management and/or cure.
What triggers crisis?
Episodes of painful crisis have been reported to be triggered by environmental and psychological factors. These predisposing factors including 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.
I have seen a sickle cell patient who underwent labour pain and attested that labour pain is milder than the pain that arises due to sickle cell.
The Bone Marrow Transplantation treatment, BMT remains the permanent cure for Sickle Cell Anaemia, especially in children under 18, could you explain this?
Bone Marrow Transplantation (BMT), which is also known more recently as Haematopoietic Stem Cell Transplant (HSCT), as it has been revealed that stem cells (unspecialised cells that have the ability to mature into blood cells) do not arise only from the bone marrow but also peripheral blood (blood drawn through the vein) and umbilical cord blood of a newborn. Bone marrow transplantation is a complex procedure in which infusion of Haematopoietic stem cells are given to an individual in order to normalise blood formation. Allogeneic, autologous or syngeneic are three types of Bone Marrow Transplantation. This classification is based on the donor or source of the stem cell. It is allogeneic when the stem cell donation is trans-individual (from one individual to another individual). It is autologous when stem cells donor is the same individual that would receive it. It is syngeneic when the stem cells are obtained from identical twins.
In Sickle Cell Anaemia, autologous BMT is not practicable; allogeneic BMT is however obtainable presently. Eligible donor must be matched genetically with the sickle cell patient, to ensure full compatibility. This is very important as the degree of compatibility must be high, though not necessarily 100%. Thereafter, chemotherapeutic drugs would be used to wipe out the patient’s stem cell, so as to ensure removal of defective cells from the patient’s body and create space inside the bone marrow wherein normal stem cells infusion is being introduced just like blood transfusion. This is usually done in a pressure controlled isolated room. The patient’s immune system is being monitored to ensure there is no complication of infection.
Bone marrow transplant is usually indicated as treatment option for sickle cell patients within age 2 -16 years. However, this does not apply to other age groups because of vulnerability to increased complications due to high possibility of organ damage in adult sickle cell patients, which impacts negatively on the overall success rate of BMT. Efforts are been made to circumvent this limitation though, as some centres are carrying out the procedure for sickle cell patients 40 years and above. However, this is still at clinical trial stage.
Dr. Allwell Chiawolamoke Orji is fading out of memory. He was that Nigerian medical doctor who, fed up with his life, plunged into the Lagos Lagoon from the Third Mainland Bridge about four weeks ago. There is no doubt that he suffered from depression, of which there were many conjectures. One of these, addressed in this column last week and posted on www.olufemikusa.com, was that he was a sickler. Another possible cause of his depression mentioned later by people who claimed to have known him, was that he was epileptic. This sounds more plausible. For it was unlikely the medical establishment would have banned him from post-graduate education that would make him a surgeon someday simply because he was a sickler. An epileptic in the theatre is unfathomable. Dr. Orji was said to be crises-prone. What if a crisis was triggered after he opened up a patient?
Before I address epilepsy, I would quickly like to say that, although Dr. Orji’s was a confirmed case of mental imbalance, there is hardly any man or woman on earth today who is mentally balanced. There are two angles I would like to view this idea from. One is the popular view that he was hypnotised by the person who had the last telephone conversation with him. The other is the biological misconstruction, which has befallen the brains of us earthmen and women today.
Last phone call
Dr. Orji was in his Nissan Jeep, driven by his driver. Suddenly, his phone rang. We are not told if there was a conversation after he picked the call. But we are informed he asked his driver to stop the car, saying he wanted to empty his bladder. The driver obliged. And Dr. Orji climbed the bridge rail and plunged into the Lagoon! Commentators went to town immediately, in a manner typical of the Nigerian environment which, spiritually speaking, belongs the abnormal zone of the earth. As I explained in one of my chat groups, the dregs of humanity populate this zone. They think low and act low. They do not see the beauty of Creation but only demons and phantoms. They are superstitious. While we cannot reject the fact that hypnotism is real, we cannot ascribe to it what it is not. Hypnotism is no more than the binding of the free will of a weak human spirit. Man is a spirit from the spiritual world, and free will is an intrinsic part of his makeup. Without free will, he is not a spirit. Free will enables him to take independent decisions in the conduct of his life. He is given free will because the Creator did not want slavish creatures. But he will account for every act of the exercise of his free will. In hypnotism, the free will of a spirit is bound, so that the spirit can be possessed and put to any use or activity in the exercise of the free will of the hypnotiser. Although medicine initially rejected the possibility of hypnotism, it employs it today in the resolution of seemingly intractable health conditions. The bound spirit is regressed in space and time and instructed to seek, in the ethereal planes of existence, the cause(s) and solution(s) of the health condition at issue. And it works. But hypnotism is fraught with many dangers, for which reason knowing ones advice against it use under whatever condition(s). For in that bound state or condition, the human spirit is stripped of all natural protection in the ethereal world into which it is forcibly projected and may be attacked and damaged there. The damage of such an inimical attack on the soul body may reflect on the earth body in due course, say in days, weeks, months or years. Even where the free will is not subdued, say in conditions of sleep and dreams, people who experience gun-shot attacks may actually feel the pain of such an attack in parts of their physical bodies which correspond with those of the soul bodies in which the ethereal attacks took place. Only a few days ago, I found myself in a dream, sitting at a dining table with some gentlemen. Habitually, I decline food in my dreams. But, this day, I did not know how I got a piece of meat into my mouth. That, again, was a surprise because, in day consciousness, I prefer fish to beef. One man rose from the table, grapped me and, with two or three fingers stuck in my mouth, got the meat out before I could swallow it. When I looked at his face, he turned out to be one of my departed uncles. When I looked at this other, they, too, had gone on. I understood the message and thanked my uncle even after I woke up. But can we call what happened to Dr. Orji hypnotism oh no … it cannot be. There was an evidence that, after the telephone call, he was still in possession of himself; his body and faculties had not been possessed by another person. Evidence of this was that (1) he instructed his driver to stop and park the car (2) he said he wished to urinate (3) he hid his real intention (4) he executed a well thought out plan.
This process of evidence-based analysis of an event is, in my humble view, a more balanced way of scrutinising an event. Jumping into conclusions without deep or rigorous thought suggest mental imbalanced. For it is not only people who wear two or three suits on top of one another in scorching tropical African weather who are mentally unbalanced. Any-one who does not think straight needs to have his or her head examined. There are many such people in Nigeria and around the earth, and that’s why our world is upside down. A few years ago in Lagos, some people thought of making money from the fabulous superstition market of the huge city. They conceived the idea that three witches who were returning home as birds from a meeting of witches flew over Oshodi, a major transport connection centre. It was reported that one of these birds flew into overhead electricity cables and hung there, gradually transforming into the witch. Thus, says the story, the electrocuted body, fell on the road. The story was told in DVD, which sold like hot cakes. No one saw the photograph of an electrocuted woman. No one asked all the questions a scientific or a balanced mind should ask, but the videos kept selling. Not long after or just before then another story broke of a baby delivered of a Christina woman who was said to have in its hand a clear miniature copy of the Koran. The aim was to tell Muslims and Christians that Islam was the religion preferred by the Creator. Even the government of Babatunde Fashola of Lagos State splashed money on the parents of this baby who immediately changed their religion to Islam. Soon after, another baby was reported to be born with a Christian crucifix hanging from its neck on which appeared the inscription JESUS IS LORD. This story, too, was widely believed. No one heard the voices of Islamic and Christian professors of genetics in the din of salutation on either side of the religious divide.
As Editorial Director/Editor-in-Chief of the Comet Newspaper, I rejected a news report that a snake killed in a Lagos neighbourhood had, prior to its death, swallowed the passport-sized photographs of some residents of a house nearby. These photographs were said to have been discovered in the snake when it was being prepared for table. What followed from that was the rumour that the owners of the photographs would die within a number of days, if they did not perform certain traditional rites in self-protection. Down the road was the killer of snake who was said to possess the powers to turn around the tables of ugly fate. My decision not to publish was unpopular, but it was justified a few days later with another report that this man had admitted to the police that he manipulate the events!
The last telephone call Dr. Orji received shows just how manipulable many of us can be. For a few days, no one knew who the caller was or what the message was all about. Almost everyone just kept calling friends and loved ones not to receive calls from that number, insinuating that the caller manipulated Dr. Orji to jump into the Lagoon. The cell phone service providers must have raked in hundreds of millions of Naira before the MTN came up to say that number was one of its marketing numbers and that it was by no means a killer number! Shouldn’t all those who became easily manipulated be ashamed of themselves? This problem of brain imbalance is rooted in the concept some researchers term biological misconstruction of man.
Biological misconstruction
This refers to the two brains of man … the small brain (the cerebellum) or back brain, and the big brain (cerebrum) or frontal brain. The development of the brain into big and small brains is a mis-normal referred to as the “biological misconstruction” or “deconstruction” by people who know, with evidence, that both brains are meant to be of the same size. One is big and the other is small only because the big one continue to grow big and dominant through use and overuse, while the other one atrophises and become stunted from use in line with the Law of Development. Indeed, the construction of the human body is such that, where organs are paired, there is, for example is no big eye and a small eye; there is no big nostril and a small nostril; there is no big kidney or small kidney; there is no big thumb and a small thumb. There are no two organs that are of the same size, no doubt. A breast or testes may be slightly larger than the other if infected or diseased or more overworked. But there is no big organ and a small organ in the sense in which we now find the Big Brain and the small Brain and so classify them. In the undistorted nature of the frontal and the back brains, they are of the same size, and they perform different but complementary functions which establish balance not only in the body’s biochemistry but, also, in human conduct or behaviour. The frontal brain controls all voluntary actions, such as running or speaking, and is the seat of thought, another voluntary action. The small or back brain is the origin of the AUTONOMIC nervous system which controls involuntary activities, such as the digestion of food, breathing, heart beat, etc and, therefore, is the brain to watch for the work of the PARA SYMPATHETIC nervous system. When the central nervous system goes out of balance due to stress of any sort, the para sympathetic nervous system tries to even out the frills, brining balance about once again. If it cannot do this, balance breakdown. Earthman is a trilogy of spirit, soul and body, often also described as mind over matter. The Spirit connects with the body through the solar plexus, a bundle of nerves which, through radiations of the blood, transmits picture images to the back brain, called the intuitively-receptive part of the brain. These pictures or flashes are of things we did not thinks about. It is possible someone I haven’t seen or thought about in 10 years is coming to see me later in the day. Suddenly, his picture “flashes through my mind”. Or, I may meet someone for the first time and, somehow, I feel heavy, signally I should distance myself from him or her. Such intuitive sensing is transmitted from the back brain, which received it from the spirit, to the frontal brain through the blood radiation. In the frontal brain, it is decoded into thoughts and/or world, classified and stored for retrieval someday. Often, the decoded though is rationalised to our detriment. Man is meant to be intuitive, receiving guidance with the back brain and using the front brain to act upon such guidance. But, today, he has become a thinking being, and this has made the frontal brain outgrow its frontiers while the hardly use back brain has shrunken. This is the “biological deconstruction” of man for which people with an unknowing glimpse of what has happened blame Mother Nature. It is the root of imbalance in thought and deed today, irrespective of whether we talk about healthy marriage, sexual life, parenting, nutrition, education or even social commentary. A suicide is an unbalanced person of a high order.
Epilepsy
If Dr. Orji also suffered from epilepsy, that too, was a breach of the Law of Balance. The pressure acting on the soul from outside must be counter balanced by the counterviewing pressure from within. And the para sympathetic nervous system must come to the rescue. There are far too many theories about the cause(s) of epilepsy than can be contained in this article. So, I would like to reduce them to this … A surge of energy breaks out from somewhere in the brain that the central nervous system cannot easily handle. It is like electricity surge which damages electrical appliances and equipment. In respect of the body, these surge cause spams or agitated motion in the central nervous control system. As nerves control the muscles, too, spasm. The whole body jerks or convalesces and consciousness is lost. Some people behave the brain of the epileptic maybe irritated by heavy metals, candida or other yeast infections or lack certain nutrient which help to step down the power. Some people behave like the nerves are too weak to hold and transmit the power. Upgrading the potential of weak nerves calls for cautions, so that they are not stimulated to the point that they cause bigger surges since the nerves originate in the brain. Another school of thought is that the Seventh Chakra, that is the hallo of the head, attracts through the pineal gland, much more ethereal power than the body can deal with. If we go by the research of Gisselle Reiners, eyes which induct too much energy via the hypothalamus into the central nervous system may be a part of the equation.
Remedies
Many of the remedies employed in Alternative Medicines are yet to be elaborately researched in clinical medicine. But they work nonetheless. Certain grades of Magnesium are known to bring calmness to the convulsing epileptic person. In the absence of some of these, I often suggest NATURAL CALM, a proprietary product. Often mentioned in the books are herbs, such as Burning Bush, Hydrocatyle, Lily of the Valley, mistletoe, mugwort, peony, vitamin E, Vitamin B6 and a Ketogenic diet, one rich in fats and Omega 3 than carbohydrates and, of course, cell or tissue salts. The medicine of cell salts is interesting. German physician and homeopath Schuessler discovered that the ash of human tissue contained 12 basic salts. When any is deficient, a symptom corresponding to its absence occurs. In respect of epilepsy, the missing links in the chain are often found to be (1) Kali phos and (2) Mag phos. Also found to cause trouble in deficiency state are vitamin E and vitamin B6. The brain is a fatty substance and needs protection, especially from free radicals, which are active in the fat medium. Antioxidants neutralise or eliminate free radicals. Alpha Lipoic Acid (ALA) is active in both fluid and fat media. Grape Seed Extract, another antioxidant, is a favourite of Dr. Raymond Strand, another of WHAT YOUR DOCTOR DOES NOT KNOW ABOUT NURTITION MAY BE KILLING YOU. Omega 3 oil (DHA) is as useful, also, as herbs such as skull cap, valerian root is good. Some authorities contraindicate German Chamomile along with Schizandra, Ephedral and Guanan and Kava. The bit about Chamomile is surprising to some physician as Chamomile is a great calment. The idea of Ginkgo biloba and St. John’s Wort being unwelcome is understandable as they energies the nerves and the brain, which, at this time, is like a raging inferno.
As a human spirit on the other side, Dr. Orji may have discovered that life goes on and that, because he had not learn a lesson his experiences on earth where meant to teach him, he may have to relief his life on this plane, like a school boy who, having failed his exams, has to repeat his class.
Former Head of State General Yakubu Gowon has claimed that 75 per cent of cases of sickle cell in the world is in Nigeria.
He spoke at the 63rd birthday and book launch of Babajide Olowodola in support of sickle cell intervention in Abuja, stating that the government should take it seriously and intervene.
He said: “The government should do whatever they can and give attention to this particular disease in order to help deal with it and the first thing that is important is, educating the people, to make sure there is good advice given to people not just to say O positive, O negative, but make sure you do not match-make people. With this at the back of our minds, it will reduce the danger of the disease.
“In the book, the author said, ‘we have gone through a long night with our last born who suffers the sickle cell disease and we didn’t think another Nigerian should be allowed to go through that experience alone. That is why we thought that the best way to celebrate this 63rd birthday, is to give back to society, to give back to humanity, to be a blessing to another family who is afflicted, who is suffering from the sickle cell disease’.
“I felt very sad they had to go through all this. That determined me to come and chair this occasion. He is doing this not only to celebrate his 63rd birthday, but to be able to do something for those who are suffering from this disease – sickle cell disease. He didn’t want anything for himself but for his son and all these young people who are diagnosed with this disease. I think this is very humble indeed and I hope and pray that a lot of people give a lot for this particular cause.
The Executive Director of Sickle Cell Foundation, Dr. Anette Akinsete, has called on the Federal Government to enact laws to increase awareness about sickle cell disorder (SCD).
According to her, such law will ensure support for SCD through the provision of health management policy, new born screening and health education.
Akinsete spoke at Sickle Cell Walk for life, organised by the coalition of non-governmental organisations (NGOs) in Lagos State in commemoration of the World Sickle Cell Day by the United Nation. The walk, which started at the Police College, Lagos ended at EKO FM, Lagos.
The walk tagged Walk for Life was put together by the Sickle Cell Foundation, Dabman Sickle Cell Foundation, Nike Opalemo Foundation, Tony May Foundation, Crison Bow Nigeria, and Genotype Foundation Nirvana initiatives.
Akinsete said lack of basic new born screening facilities and major drugs in the management of sickle cell can pose a serious threat to livelihood and survival of people with sickle cell disorder.
She said the need for newborn screening centres is fitting, urgent and would go a long way to support children and families with sickle cell disorder children.
She said: “We cannot afford to ignore a hereditary disease that affects over four million Nigerians. In fact, roughly 75 percent of the 150,000 children with SCD die before their fifth birthday.
Beyond the statistics, we cannot continue to ignore the faces of people in anguish, confusion and often neglected both physical and emotionally because they have sickle cell disorder”.
She continued: “In a country where we have the highest number of people with sickle cell in the world, they are stigmatised and discriminated as they are called lazy by teachers and denied jobs by some employers. There is need for all stakeholders to come together”.
She lamented non-availability of basic drugs for the average family with sickle cell children, stressing that doctors and nurses have not gotten a total understanding in managing people with the condition.
The Chairman, Dabman Sickle Cell Foundation, Pastor Emmanuel Ibekwe said the essence of the walk is for mass enlightenment walk that will lead to change of attitude.
“We are deploying allavailable resources to campaign for millions who are in pains. To set a largely misinformed and ill-educated public free from the evil of sickle cell disorder,” he said.
Various information leaflets, handbills, umbrella, face caps, tee-shirts were distributed and songs charted in to raise awareness of sickle cell was part of the walk.
Abimbola Edwin and daughter, Timilehin are both sickle cell carriers who have literally battled the ailment to a standstill. They have also been involved in advocacies against the condition, helping to lift several other people in similar condition. They share their stories with Medinat Kanabe.
BORN 56 years ago by parents who were both AS genotype, one could say hers was a lucky family, as her parents ended up with only one sickle cell anaemic child out of six. That lone child was Abimbola Dada now Abimbola Edwin courtesy her marriage to Mr Edwin.
As a child, she said the pains came typically, but the good thing was that her parents being elites discovered in time – as soon as she began manifesting the symptoms at four months – and took good care of her until she could manage it on her own.
Now conveniently past the proverbial golden age, one could also say the luck that abided with her parents, has kept her company, as few children with sickle cell anaemia ever make it this far. She confirmed that as a growing child, she was assailed with stories of how people with sickle cell rarely live to be 20 and all such scary tales; but Abimbola said she prayed hard.
“They gave me time but as God would have it even at that young age, I believed in Him and I knew somehow that nothing would happen to me. I didn’t know Him then as I know him now but I am glad I knew Him.
“I never doubted for once that I would live long; so even when I gave my life to Christ, that was the first thing I asked of him – that by His Grace I would not die young.”
Recalling how she met and married her husband, Abimbola said: “My husband told me that it was when he saw me in crisis that he took the decision to marry me. He said he couldn’t leave me alone because something told him I needed someone to take care of me.
“At that time, he wasn’t even sure of his genotype but when he checked and found that he is AS, he decided there was no going back because it just seemed like the right thing for him to do. His family too have been supportive over these years.” She enthused.
Asked if she would advice those who are not married yet to check their genotype before settling for a life partner, the Ekiti State born said she would, adding that this would definitely save them the usual trauma. She said: “As a believer of Christ, I know he will find a way out for them. If you have a strong faith, you will also know that anybody can die at any time, even if they are AA.
“As for those who are already married and have children who are SS, they should not lose hope. They should visit the clinic, keep appointments, take their drugs regularly and live healthy.”
Edwin, who is an international business woman says she takes time out to counsel people on the condition. “I tell them to take their drugs. I am not a medical doctor but sometimes when people are in a crisis and they tell me how they are feeling, I just give them a little therapy like; if you are gassed-up, simple soda water can bring you out of it. Personally I have studied myself, so I know when the attack is coming and therefore take my drugs and rest. Other people can do the same.
“With more enlightenment, people will no longer be scared of having a sickler as a husband, or wife or child. Personally I believe there is nothing anybody of my age can do that I cannot do.”
Timilehin’s Crimson Bow to the rescue
Abimbola’s daughter, Timilehin, who also lives with the sickle cell anaemia, is also deeply involved in the crusade to overpower the sickness. She revealed that her blog, Crimson Bow, focuses on educating people on the different aspects of sickle cell anaemia, even as she confessed that she didn’t know much about the condition until she started the site.
As a child, Timilehin said, “I didn’t really know what was happening until I got to secondary school. I thought I could play around and everything; but I started having frequent attacks. However, it wasn’t the attack that affected me but the psychological effects.
“I was fortunate to go to a good school with a proper sick bay and my principal along with other teachers knew about my condition and hardly punished me. But my classmates didn’t know why, so they constantly bullied me, called me all sorts of names and generally picked on me because of my smallish nature.
“Consequently, I was always coming home crying and my mother would go to school to see what could be done to stop the bullying. One day she told me ‘Timi you have to fight your own battles, nobody will fight it for you’.
“Even as a child, that touched me. Thereafter, I have had attacks that could have taken my life, but I told myself that I won’t die. So I fought and survived them. Also watching my mum go through a lot to raise the three of us, holding a career and becoming an international business woman have given me the will to want to keep moving.”
The 29 year-old explained that sickle cell anaemia has far more implications and conditions than many understand. “For instance,” she said, “when I started, I discovered that sickle cell causes stroke. I also discovered that many people don’t know about simple things like how to treat yellow eyes. A lot of people in this country would rather opt for traditional means than follow the proper medical treatment. There is the case of a woman who recently went to wash her daughter’s yellow eyes traditionally and as we speak, the girl is on the verge of blindness.”
While explaining that what she does goes beyond just running a blog, Timilehin said she tries to get everybody concerned involved. According to her, many people don’t read; as a result, she goes out with her team to schools, campaign on radio programmes, and offer help to people who have financial problems, because, as she put it, “the condition can be pretty expensive to treat.”
She noted that Crimson Bow is out to make people understand that they don’t have to take all the drugs in this world to get relieved. “For example, there was a time in my life when people were asking me if I have tried this or that drug and I kept trying everything because I was desperate, but nothing worked.
“A lot of deaths by the anaemia can be avoided if the mind can be adjusted; but a lot of people just give up in their sick beds. I get calls from people saying they want to die, that they are tired of life; and I understand them because I have being there. There was a time when I felt I was tired of life too; although it wasn’t directly related to my SS status. I was being rejected in my relationships; but it was at that darkest moment of my life that the blog started.”
The 2007 Mass Communication graduate of Covenant University and Netherland Business School also hinted that anyone living with sickle cell needs support from family members and friends. “I know of a young man who committed suicide at the end of the day. He had to do it when his family members rejected him by constantly taunting and ridiculing him. I want them to know that there is always the down point but what we do with it really matters.”
On the issue of aborting foetus diagnosed with SS, Timilehin said she does not support that. “I believe the gift God gives us comes in different packages but we need to unwrap it first to understand the value. Thank God for medical advancements, there are so many things that can be done and you will be surprised that you will not get an attack as frequently as some other people.”
Timilehin explained that Crimson represents the colour red while the Bow represents the shape of the human blood cells and a weapon for fighting, stressing that “In Sickle cell, you must fight to the end.”
Crisis is one word that most human beings do not want to have anything to do with in life. But for Sickle Cell Disorder (SCD) patients, crisis is inevitable and in most cases a lifetime challenge that they have to grapple with. INNOCENT DURU, in this report, examines how some of the patients have succeeded in living for several decades with the disorder, which in the view of many hardly allows its victims to attain old age.
Toyin Adesola, the executive director of Sickle Cell Advocacy Management Initiative (SAMI), had her hip bone dislocated at a tender age in one of her many struggles with crisis associated with Sickle Cell Disorder (SCD). She had a surgery done to correct the challenge but that was incapable of totally saving the situation as it made her to depend on crutches to move about thereafter.
Subsequently, she also suffered gall bladder complications and several other complications which made her to undergo more than five surgical operations to remain alive. After several years of going through the valley of the shadows of death, Toyin, who clocked 50 years recently, described the pains that come with each crisis as excruciating and worse than labour pain.
Narrating her ordeal, she said: “I was born with SCD. In fact, it was a trying time for me because apart from the normal crisis, I had other complications that are associated with the disorder. I had over five surgeries and numerous blood transfusions. There are different complications for SCD patients. For me, it caused the dislocation of my hip and I had to have hip surgery. Some of us have gall stone complication. I had that and had to do gall stone surgery. There were other things like that, that I had to have surgeries for.
“The crisis doesn’t announce itself when it is coming. I can be talking to you and suddenly it will start. But for me, it was always starting at ungodly hours of the night. It was always happening around 1am and 2am and it was very challenging moving around at that time of the day. My parents luckily were in the university system so there was easy to take me to the health centre and from there to the Lagos University Teaching Hospital (LUTH) but for most people that I know it is always a challenge.
“People don’t understand the degree of the pains that we go through. The pain we experience is far worse than labour pain. At times the pain is so severe that the drugs they give would not even reduce it. I have had my finger slammed on a car door before and it got broken. People were wondering that I was not crying to show it pained me but I made them realise that the pain as an SCD patient is worse. Such pains don’t affect me as much as when I have crisis. The pains are always in the extreme.”
Aside from the physical pains she suffered, she added that her education also suffered serious setback because of the crisis.
“I had to put my education on hold for many years because of the hip dislocation I had. Most of my mates had completed their university education when I got admission. I did a crash programme to get my O’levels. What many others did in school for five years, I did for two years. I had a tutor who was always coming to teach me. I passed WAEC and JAMB and got admission into the university. I studied Economics.”
Among the SCD patients that have weathered the storm in Nigeria, the case of 90 -year-old, Alhaja Ashiata Aduke Onikoyi-Laguda, appears strange. When our correspondent visited her home at Ilasa area of Lagos, she was lying ill following the injuries she sustained after falling down recently. In spite of this, her memories remained sharp and her voice resonating like that of a maiden.
Contrary to claims that the victims would have to live with crisis all their life, the nonagenarian told The Nation that she stopped having crisis and features of SCD 50 years ago. Her words: “I had SCD from a very tender age. It started after I had fever which later came with measles. The hospitals didn’t know what SCD was all about then. The perception of SCD patients back then was that we were what the Igbo call ogbanje and the Yoruba, abiku.
“Back then, I always had crisis and might not attend school for more than two weeks in a whole term. The crisis would always come in either my hand or legs. I couldn’t go inside rain or touch cold things. They were always making fire for me to warm my body. I attended Queens College and one of the key co-curricular activities was swimming but I couldn’t take part it.
“My mother’s desperation to see an end to my health challenge made her to travel to the east to get native medicine from there. She was told that the challenge would go if I should use it to take pap. But it didn’t solve the problem.
“When I wanted to go to London in 1960, my mother kicked against it because she felt that the cold weather would aggravate my condition. When she insisted, I simply told her that the God that was protecting me in Nigeria would be there to also protect me. I did have crisis when I got there but they had good medical arrangement that handled the situation on each occasion.”
In the heat of her trying times, she said her husband didn’t abandon her but instead stood by her and played a crucial role in her recovery. “My late husband, Mobolaji Alakija, was a medical doctor. He really took good care of me and helped me to handle the challenge. And after about four decades, the crisis diminished and I can say today that I don’t have SCD again. It was the grace of God and I give glory to Him for my healing.
“I feel good and on top of the world attaining this age. I am very healthy until I fell recently and sustained injuries. I strolled out that very day and when rain was about falling, I started rushing back home to take the clothes I spread to dry. In the course of going back, I fell. I am begging God to heal me.”
Aside from the regular crisis that she had growing up, Modupe Olopade-Popoola, 57, shared heart-rending accounts of how she was stigmatised for being an SCD patient. : “I was diagnosed for SCD at five months old at the University Teaching Hospital (UCH), Ibadan. Thereafter, my mother would always rush me to the hospital each time I had the slightest pain. I was very sickly during my primary school days and fell into crisis very often. I also had blood transfusion a couple of times. Even though my health condition would not allow me to attend classes very often, I would always take first or second position each time I returned to school. I see this as a form of compensation by God. A good number of SCD patients are always very intelligent.
“I didn’t know SCD was a challenge until I started looking for job. In 1976, after my secondary school, I worked in the advert department of a national newspaper. I left after my sister died because I could not handle the situation. Thereafter, I longed to be a banker. Fortunately, one of the leading new generation banks in the country now was recruiting. My mother knew the bank manager who included me among the people that would write the test.
“I wrote the test and scored the highest mark. I was filled with joy but just when I was expecting to have my appointment letter, we were told that we should go for medical test and I did. Few days after, my colleagues started getting their appointment letters. When I didn’t get mine, I went to the bank to inquire but they said they were yet to get my medical results. When I went to the medical centre, I was told that they had sent it to bank. The bank and the medical centre kept tossing me around.
“My father’s friend later looked into the matter and saw that they refused to give me employment because of my health condition. They said I could break down anytime. I wept bitterly because they dashed my ambition of becoming a banker.”
She added: “Thereafter, my father’s friend at Nigeria Textile Mills (NTM) helped me to get job in the company. I was posted to the audit department. After working for three months, I was to go for check up. When I told my supervisor, he said I should inform our overall boss. When I told her, she said I should apply for one day casual leave. When I returned, I was told that the personnel manager who was my father’s friend wanted to see me. When I met him, he asked where I went to the previous day. After telling him, he brought out the letter I wrote to apply for casual leave. To my surprise, my boss had written on it that I was not fit to work in the company and should be sacked.
“I was dazed and wept bitterly. Instead of sacking me, he redeployed me to his department. It was at that point that it dawned on me that my medical condition was really a challenge and made up my mind never to work under anybody again. I sat at home for one year doing nothing. Later my father prevailed on me to go for Secretarial Studies. I obtained Yaba College of Technology form but didn’t finish my National Diploma (ND) when I had the opportunity of travelling out. I went to London to study Catering.”
Recounting her experience abroad, she said: “When I got to London, I went to St Mary’s Hospital to register and inform them about my medical condition. Incidentally, I didn’t have a single crisis throughout the years I spent there. The hospital became worried when I didn’t honour the appointment given to me. They called to ask me if I was okay and I responded in the affirmative and made them understand that my tight schedule made it impossible for me to come. They demanded to know when I was always available and I said weekends.
“To my surprise, I woke up one morning to see an ambulance waiting in front of my house. They said my attention was needed at the hospital. When I got there, they checked me and confirmed that I was okay. They said I should always call to reschedule my appointments whenever I couldn’t make the date given to me. When I finished my training, I got a job with the Bank of Scotland but had to return to the country to take care of my parents.”
For Ayoola Olajide, a journalist and publisher of SCD Journal, the year 2006 would remain unforgettable in his life. That year, according to him, was when he had the worst crisis that almost took his life. “I was found to be having SCD at 18 months. I had severe crisis when I was growing up but I have not been having that again. I only have mild crisis now. This year, I have had just two mild crises. My worst crisis was in 2006 and I thought I was going to die that very day. It happened at about 1am. I was having severe pains all over my body aside from my neck.
“While I was struggling between life and death, a nurse was busy telling me to stop shouting because I was disturbing other patients. That was very cruel because she didn’t know what I was going through. I never knew I could survive that very day because it was terrible. I shed tears each time I remember that very day.”
Olumide Ashley-Dejo bemoaned the attitude of the society towards SCD patients. He said: “Not many people believe anything good can come forth from an SCD patient. I had several cases of stigmatisation. It’s a routine thing we all have to deal with. Otherwise how do you explain not being promoted at your job for 10 years in spite of a top performance and delivery?. We all just have to own our lives and take responsibility. I never want to blame anyone for any shortcoming I may have.
“Stigmatisation for SCD patients transcends marriage, school, the workplace and everything in life. As a young boy, I wanted to play football like anyone else until I realised that competitive sports is not meant for me. In the university, I also partied like anyone else in the extreme Jos weather conditions to the detriment of my health. Also in school and at work, I had to perform beyond others or stand the risk of being kicked out.
“I was found to have SCD when I fell ill at age two in 1967. At a point, I had severe crisis every other month which would land me in hospital for an average of two weeks. I hold a Bachelor’s degree and a Masters degree in Architecture. Though, I lost one year in the process of my university education, I just always had to catch up anytime I recovered from a crisis.”
Burden of priapism in males
Aside from the general pains that are concomitant with the crisis, it was learnt that the males have a special pain peculiar to their gender. The condition, priapism, is said to be an unwanted erection that could last for over 20 minutes.
Sharing his experience of priapism, Benson Oni said: “The first time I observed it, I thought it was an extreme morning glory all men have at some point. But I started feeling severe pain when my manhood refused to go down after a long time. It was worse than other crises that I have had because while you could show other parts of your body that are paining you in period of crisis for massaging, it is not easy to do so in the case of erect manhood. People would not even understand and would mistake it for something else. This is worse when it happens in a public place.
“There was the case of a boy who had priapism in school and unfortunately, the class teacher mistook it for an act of immorality. She scolded him and asked the innocent boy to kneel down. It was when the boy had additional crisis that it dawned on her that he wasn’t joking. This is why we always make people around us to know our health conditions.”
Modupe also spoke of a young man that lost his potency after he was ignorantly put through surgical operations in a private hospital.
“When the young man had priapism, he was taken to a private hospital. The doctors didn’t know what the problem was and carried out surgical operation on his manhood. At the end of the operation, he became sterile.”
Interestingly, Olajide said he has never had priapism. “I never heard priapism for a day. I really give glory to God for that. I had a cousin who did. It was always very severe for him but we thank God that he was able to have children before he died nine years ago. Many children of four years and above also suffer it.”
How we have been weathering the storm
Asked what they have been doing to put the crisis in check, Toyin said: “For me, emotional stress is the greatest trigger. I have learnt to know my limit when it comes to physical and emotional stress. If I notice that I am getting tired, I take a break. The problem with most of us is that we are always trying to prove to people that we can achieve a lot. Unfortunately, that can be to our detriment. Sometimes, you don’t blame us because when you have a lot of stigma, you want to prove that you are not incapable. I also don’t joke with my drugs. I also have something that reminds me to drink water because sometimes, I can forget. You just need to know what triggers your crisis and you just have to stop it.
“The fact that my parents were buoyant and educated helped me a lot in managing my situation. Way back in 1965, SCD wasn’t popular but because my parents were medical personnel, they got themselves educated further about my condition. Knowing about it helps a lot. Not all doctors know how to treat SCD.
“The basic drugs cost between N2, 500 and N3, 000 monthly. When you have crisis, the cost of managing it can be from N20, 000 to N500, 000 depending on the hospital, nature and period of the crisis. There are some people that do not have crisis more than once in a year and there are some that have it every month.”
To avoid crisis, Olajide said: “I always take enough water, have enough rest and stay away from stress. But the Lagos traffic is one stress that one cannot avoid.”
Modupe hinted that she endeavours to eat and live healthily to stay away from crisis. “As SCD patients, we were made to believe that we could die anytime but I refused to believe that and I’m always determined to live. After my secondary school, I was already much aware of what SCD is all about and could take proper care of myself. I know everything that can trigger crisis and always guard against them. I engaged in sports but would never go beyond my limit”.
Controversy over AS marriage
The respondents differed on the appropriateness of AS patents to marry, Toyin said: “ There is a pending bill that is out to stop AS people from marrying but I said that is not possible. It is relative because I have seen AS people who were stopped from marrying and they went about looking for AA to marry without checking the character of the person. Unfortunately the partner is a wife beater. She had children that are not Sickle Cell patients but didn’t have peace in life. The most important thing is to give people knowledge and make them see reasons why they shouldn’t do certain things. Ultimately it is their choice. You cannot force anybody to do anything”.
Modupe objected. She said: “I am against AS marrying each other. It could be sweet at the beginning but when the chips are down, the love would disappear. Besides, it is the child that suffers most. Development like stem cell replacement is very expensive and not affordable for many people. The easiest way out is to stop AS and AS to get married. We need to speak against this in order to stem down the challenge.
“I had my blood drained and replaced with that of AA but after some years, it went back the SCD type. The idea of stem cell replacement is not also viable because it is very expensive. The cheapest and best way to avoid the problem is for AS not to marry”.
A Catholic priest, Rev Fr Day Jenfa, also kicked against the idea. He said: On no ground should AS people be allowed to get married and nobody should put anybody through that stress. Unfortunately, it is the children that suffer most. The Catholic Church does not allow it and would not sanction such marriage because they are not genetically compatible. This is the mind of the church and nothing contrary can be accepted.”
Private hospitals and management of SCD
File picture of youth corps members on SCD enlightenment campaign
Reliving her experience with a private hospital and that of a mismanaged priapism case above, Modupe alleged many private hospitals don’t have what it takes to treat SCD. “There was a time I had a severe crisis and when we got to the house of a Prof that was to treat me, the wife peeped from the window and said that he was sleeping. I had to be rushed to a private hospital. For three days, they couldn’t handle my situation and for that period, I was in extreme pain and couldn’t sleep. When the Prof was contacted again, he demanded that I should be brought to him.
“Unfortunately, the hospital refused to release me. It was after he threatened to sue them should anything happen to me that they released me. When I got to the Prof, he only gave me a medication and I slept off for three hours. When I woke up, I started moving my hands and legs that I couldn’t move before and started moving about. Hematologists are important in managing SCD.”
Her claim was also supported by Toyin who said that many doctors, especially in the private hospitals, don’t have the expertise to manage SCD.
Olumide in his opinion said: “I can’t blame the private doctors because, really, all they do is manage the situation while hoping it subsides. SCD is a black man’s problem and I guess that is why it is not properly researched and doesn’t get much attention. We really don’t have a firm grip on the disease. After all cancer, diabetes and even Ebola catch the attention of the world and things are being done to find cures to these ailments. So, why not SCD?”
They advised that government should make provisions for special wards and hematologists for SCD patients to reduce the mortality rate and mismanagement.
“Government’s attention is totally not there for us. We need their support and intervention to save many lives and families. It is not enough for us to be granting interviews without any intervention from the government. If some of us could take care of ourselves, there are so many others who have no means of taking care of themselves and this is why many die. We need the government to pick interest in SCD challenge as they do to other major health problems,” Modupe said.
Psychological effect on victims, caregivers
Lateefat Odunuga, a psychologist, said: “Caring for a loved one with sickle cell disease is no easy task. It does not only require caring for someone you love at home, but it also means facing personal concerns about the disease. It may be frightening to discover that there is no cure, and this can generate excessive worries from members of the family and the caregivers of the victim.
Physical and emotional care can be time-consuming and financially draining. Many caregivers of people with sickle cell disease have concerns about their loved ones’ illness and future health prospects.
“Practical concerns, such as worries about financial issues and time management are also common. It is pertinent to have more information as a caregiver about the illness so as to ease the caregiver’s role. This can be important for new caregivers of small children with the disease. The feeling of helplessness from caring for a sick child or relative of any age can be reduced by becoming knowledgeable about the disease. It can be difficult to learn about a disease when you do not know where to start.”
She added: “When there is inadequate management of sickle cell crisis, it may have several psychological negative impacts on the individual and his caregivers. The episode of this illness is associated with negative thoughts and erroneous assumptions about the victims such that parents could even think that their children die soon. Therefore, each episode of sickle cell crisis, illness or hospitalisation creates fear and anxiety, which leads to generation of mental health issues ranging from depression to anxiety disorders etc. These anxieties and fears that perpetuate the minds of patients, their parents and focus on the pain and the morbid fear of death can be all consuming.
“This psychological dimension exacerbates the physical experience of the pain and the stress associated with this may compound the sickling crisis. Illustrating the socio-cultural difficulties experienced by this client group in health care settings, especially in respect of pain management, Conflicts can arise between patients and carers because of a lack of trust, misunderstanding of care needs and loss of mutual respect. The patient in severe pain will not understand why the caregiver is accusing him of being ‘selfish’ and failing to appreciate that there are other patients in the ward who also need the nurse’s attention. A busy and stressed health carer perceives that the patient’s demands are unrealistic, especially when other patients need his / her attention just as much or more, perhaps the time to give further pain medications has not arrived and the patient’s incessant demand for pain relief becomes an irritation when attempts have been made to explain this to the patient and or his family and they fail to understand the issue.
“The introduction of alternative therapies, such as acupuncture, aromatherapy and massage are proving beneficial in relieving pain in this client group and reducing the tensions inherent in the carer / client relationship. The use of Cognitive Behavioural Therapy (CBT) is emerging as a useful therapeutic intervention in managing acute and chronic sickle cell pain and is proving a viable and effective alternative or adjunct to medications, provided clients can be encouraged to sustain their efforts to learn and use the technique. Also, CBT can be used on parents of victims such that they should be made to understand the myriads of losses associated with this illness.”
