The  word that best describes Aisha Edwards in my opinion is “a woman of valour” who fights for what is right and what she believes in.

Born with a scourge, sickle cell anemia; Aisha endured so much pain physically and emotionally while as a child. She was labeled a witch and adjudged a must die, no thanks to her sickle cell disorder.

Life seemed to be nothing but a bundle of pains, but she didn’t mind. She fought to stay positive, to live happily and fulfil her destiny.

Aisha Edwards today is a household name in Nigeria. She is the National Coordinator of the Association of People Living with Sickle Cell Disorder, helping those living with the scourge find happiness and fulfillment in life.

May we know you please?

My name is Aisha Edwards, the National Coordinator of the Association of People Living with Sickle Cell Disorder, here in Nigeria, based in Anambra State. I am glad to have you here in our Secretariat. I am an Igbo woman and had an intertribal marriage which explains the mix up in my name which is very beautiful and unique. Unfortunately, I lost my spouse at a very short while after marriage. I look forward to settling down soon in Anambra State officially. By then, maybe I will have a new identity and what I represent. That is, it about me and my person.

My childhood experience was challenging

Growing for me, was very challenging because I was born with a scourge, a genetic scourge at that, known as Sickle Cell Anemia.Nobody knew what it was until I was six years old. I was born into a family that was quite rich and comfortable. My Dad was not that educated per se. He was a businessman and very rich too. My Mum was trained by my Dad. So that explains the circumstances that led to my birth, because if my both parents were learned perhaps, they may not have been married or given birth to me, that I can vouch, because each time I was in crisis, I felt the pain directly, but they felt it ten times emotionally, financially, psychologically, mentally and otherwise. A family that was built with love became heavily threatened as if it was going to collapse due to the frustration and confusion surrounding my scourge.

Discovering the Sickle Cell Anemia

My Dad gave so much attention to me. I think I am his most favorite child. I may not be right, but for so many reasons, I feel I was. He took good care of me, He wouldn’t want me to go through pain. He felt most pained and disturbed when I had those excruciating pains that you hardly see him at his workshop. My Dad was a Mechanical Engineer. He constructs machines with a lot of boys working for him. Each time I was in crisis, he was always out of his shop, leaving the business for the boys. Those days, people who used Lister Generators were the rich and my Dad was into that business. But he always left his work just to be with me each time at the hospital.

There was time I stayed in the hospital for six months. I was caned in primary school because one of my books was not wrapped and that landed me in hospital. I was given just one stroke of the cane others were given many strokes but just one stroke scattered the whole bones in my hand. So, I was rushed to UNTH Enugu. It was there the doctors discovered that I had Sickle Cell Anemia. So, they banded my hands with POP. The doctors said I suffered from Osteomyelitis.

My parents got to know about Sickle Cell Disorder through medical investigation and presentation and they were advised not to continue giving birth to children because they may bring children suffering like me to the world, knowing that they are not genotype compatible. It became a very big trauma for my family.

And then, the news in town was that Sickle Cell children don’t live up to some certain age, some ten, twelve and at most twenty. Then my parents were always looking at me like I would die the next day and they were so careful with me. So growing up in that scenario was very special but mixed feeling because I was treated like a queen, given the best treatment in life,at least as young as I was. But at the same time, I passed through the unbearable and horrific pain of sickle cell of course as a child not even knowing what I was going through.

Traditional Discovery and Cure

I came from a royal family. You could see me wear a royal bracelet.Those from my paternal side thought it was a spiritual case and I was a reincarnation of somebody. So they went to look for who I reincarnated from traditionally. I went through a lot of traditional exposures. I was given scars, I tasted blood of so many animals; like cock, goat, cows. Some were used to bath me. I was even dedicated to some river goddesses and named after them just to protect me. Then from my maternal side, my mum is from Mbaise in Imo state while my Dad is from Afikpo south, Ebonyi State. Probably because of the attention my Dad gave to me, people came with several so-called solution to my problem, even to the extent of going to my mother’s place to seek spiritual help. My maternal side took me naked to a native doctor with me carrying a lamp with all sorts of charms. I still recall also, how I was taken to Ngwuta Lake and bathed naked and even named after the goddess of the river (Oguide). Some people who knew me as a kid still call me that name. It was bizarre experience for me.


Then in school, many a times I would break down with the crisis. I may not go to school for months but when I returned during exams, I came out tops in my class. That’s why I tell people that most sickle cell children are intellectually sound. They do a lot of reasoning, meditation, thinking and they have this strong connectivity with the spirit because they don’t walk around. That explains why they are called ‘Ogbanjes’ the mysterious children in the days of old, because we have this strong connection with the spirit. They are usually very stubborn and hyperactive and after that, they have a break down.

Okay, back to school like I told you,  I was always top in class and  it’s not like the spirit told me all I was doing in school but I found out I was doing well, because when I would be in class, I paid attention to all I was taught and it stuck to my head that I gained  series of scholarships. All through my lifetime, I was trained on scholarship, the popular philanthropist Arthur Eze gave me scholarship, an Airline owner also offered me scholarship. A once Bishop of Enugu Diocese gave me scholarship too. Texaco also did during my secondary school days. My Dad could afford my fees, but I was always coming home with Medals and academic prizes that won me those scholarships.

Every competition and congress, I normally got prizes. Each time I made such academic records, I got bad treatment from my peer in school and I lived as a loner. People often saw me as a spiritual child. I was a boarding student. You know Sickle Cell patients are allergic to cold, rain and we don’t put our hands in cold water for a long time. Since I was born, I hardly do my laundry myself. This is not because of bigmannism, the condition fashioned our lives that way. If I do that, I found myself on the sick bed, paying over hundreds of thousands, instead of doing that, why not bring twenty thousand naira and pay who would do the chores. So, it is an expensive lifestyle. As I was telling you, during exams, I scored very high, but I got persecuted and tagged a spiritual child, asking why I came out tops even though I was in hospital throughout, but I used to read anytime I had a relief of the pain, even with the drip fixed to my hands.

 The persecution continued…

Do you know that, the persecution got worse in school, that students sprinkled Holy Water blessed by Rev Father Edeh at my corner in the hostel, tagging me a witch and other derogatory names. One reason again was that during Fr. Edeh’s prayers I usually did not come out since it was too stressful, most times we stayed under the sun, knelt down on the stones for a long time which affected my system badly. The sun rays sucked water out of my body and my blood clot, which was very bad for a sickler, but none of them understood me then. They felt  I was dodging prayers and deliverance, so I was literally baptized a demonic child. I was accused for nothing, which if my parents were aware, I would have been withdrawn from that school.

My parents took me to a Missionary school, hoping the stress would be less and I would be cared for. But the punishment I went through from students at the Missionary school was so bad and dehumanizing but then, I thank God there were some elite who understood me and gave me a chance. So, I coped and managed until I left secondary school. I didn’t blame my schoolmates because, up until now, many do not understand what Sickle Cell is all about. The society condemned me to death, because people propounded theories that Sickle Cell patients die before twenty, putting children in trauma and parents have given up on the kids who could have been their respite tomorrow. Even if there was a little care, they withdraw it and fast track the death so that they can rest.

Because of this scourge, I lived an innocent life, clung strongly onto God. I was adjudged that I would die, so I felt the hell fire I was going through due to the scourge was enough for me to forbid anything that would take me to the Hell fire I knew nothing about. It was a beautiful check for me morally, but psychologically was stress and torture.

My Admission into the University

I gained admission but my parents never allowed me to go, because it was University of Nigeria Nsukka, far from home. They preferred to train my other siblings, not because they hated me, but felt I would die. I had to abscond from home. I then pleaded with the Bishop, because I scored two hundred and sixty then in JAMB. So, the Bishop said I should apply and if I passed, he would pick up from there. When I gained admission, Bishop took care of everything, gave me his direct line and asked me to call each time I had any problems or crisis. So, I went to school, though I was always brought back to the hospital at Enugu because I always fell ill. And the distance was not too favorable…There was a time I had a very terrible crisis that I almost lost my life, so I became more scared of my life. My parents also threatened fire and brim stone, I felt the kindness of the Diocese should not result into another thing on my cause. So, I absconded further….


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