Joy lives in rural Kubwa with her grandmother known as ‘Ma’ Danjuma or Mrs Danjuma. She was diagnosed of sickle cell anaemia at the age of 5. Her parents abandoned her as they couldn’t cope with the challenges that came with her health condition due to their lack of finances. So when they stopped making contact with Joy, her grandmother took her in full time to care for her and is her primary caregiver.  

Her story moved us as she told us life has been extremely hard for her without her parents. But also, she lives in abject poverty so living with sickle cell and the cost of care is extremely difficult. Whenever Joy is having a crisis, they would go to the hospital, but the hospital demands upfront payment, so her grandmother is left scrambling for funds. When her grandmother is unable to raise money for her hospital care when she is in a crisis, she doesn’t go into hospital which presents a risk to her life.  She stays at home in excruciating pain, resorting to cheap basic ineffective pain relief or native herbal concoctions until it goes away.

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She tells us she cannot remember when she has not ever been in pain or in a crisis. Her grandmother tells us due to financial difficulties; they hardly eat well which is an added difficulty to Joy’s health challenges. Sometimes, Joy is out in the streets begging strangers in her community for spare change in order to buy a meal. Joy at a very young age as a child has had a tough life. She tells us she has had countless lifesaving blood transfusions when she was unwell because of how anaemic she had been in the past. Ma/Mrs Danjuma, Joy’s grandmother tell us she is pleading with the local and national government of Nigeria and even individuals who hear her story to help her granddaughter, Joy because in her words “she is afraid that Joy won’t make it, and if the sickness doesn’t kill her, then starvation could’.

Peter Daniel, born to Lydia Samuel, is 10 years old.  Lydia had 6 children [2 girls and 4 boys] Peter is the only survivor of his siblings. They were all born with sickle cell. Peter was diagnosed when he was born, Lydia told us she has faced so many challenges giving birth to children who all had sickle cell. Her husband fell permanently sick because of the death of their 5 children. Lydia told us she didn’t have any knowledge of the condition and so didn’t have genetic testing before she got married. She tells us she couldn’t believe she gave birth to 6 sick children. They were always sick, in pain and on blood transfusions. When her children clocked the ages of 13-15 years, they all died. “I do not think I can survive losing another child, my only child”.

 

Lydia explains that they live with a lot of need and have significant financial challenges which make it extremely difficult to look after Daniel when he is unwell or buy his medication and pay for treatment. ​She tells us that Peter regularly refuses to take his medication which breaks her heart. When we talked to Peter, he told us said that he is tired of taking the same medicines every day and that his condition stops him from doing certain things that his peers do; like playing football. He loves playing around with his friends, but he tends to get a crisis after playing so he avoids his friends and stays at home to prevent having another crisis. “It’s isolating”, he explained. Peter Daniel tells us he struggles with his chest and leg pains when having crisis.

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PETER PASSED AWAY IN 2020

[Mrs Sefia Ibrahim – Mother]

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Mrs Sefia Ibrahim and Idris Ibrahim are from Madala in Niger state, Nigeria. His older sister died of sickle cell anaemia at the age of 5 years old. Sefia tell us…

 “It was not up to one year I lost my daughter to sickle cell, I was dealing with the devastating loss of her passing and then discovered that my son Idris also has sickle cell anaemia.
 

His whole body would start swelling up and he would be in a lot of pain for no reason known to me I took him to the hospital for a test where they confirmed that he is a ‘sickler’. When my first child was diagnosed with sickle cell anaemia my husband and I were advised to go for a genotype test where they told us that we have the same genotype AS and at risk of having a sickle baby. When we found out it was too late, I had already given birth to two ‘sicklers’ and lost one to the disease.
 

I have so many challenges taking care of him, because sometimes when he is sick, we are unable to take him to the hospital because there is no money for healthcare. It was lack of money that made us lose our first child, because we couldn’t afford to take her to the hospital or buy her medicine when she was sick. I am calling on the government and individuals to help ‘sicklers’ in this country, I don’t want to lose another child to sickle cell”.

Hadissa Musa is a mother of 5 and 3 out of her 5 children live with sickle cell. She tells us about the challenges she is facing taking care of three children with sickle cell. In her words: “when my husband and I got married, we didn’t check our genotypes, in fact we didn’t have any knowledge of what this disease was then. When I gave birth to my first born, she was tested, and it turned out she didn’t have sickle cell. My second child, Isma was born with sickle cell, my third child was sickle free and then my last 2 children Farida and Nura were born with sickle cell. It hasn’t been easy for me and my husband financially; my husband doesn’t have any tangible work or occupation that brings in any substantive income. I myself, trade yams and this trade only generate petty change which is close to nothing.

 

You know, sometimes they all get sick at once and they won’t be any money in this house to take them to the hospital or even buy them medicines in our local chemist. It’s hard as a mother seeing your kids in pain and you are unable to do anything to help them. Just the other day Nura had a crisis, they had to give him blood in the local government hospital, My husband and I had to go borrow money from neighbours and friends in order for them to treat him and give him blood.

 

I am begging the government to help bring in people that will come into communities such as ours to teach people about checking their genotypes before having babies because most of us are not educated, we don’t know anything about genetics. We don’t even know much about this disease. We are the forgotten ones because we live in rural communities. I have found out my younger sister’s kids have sickle cell. If we had been educated about this issue, would have avoided having kids with sickle cell and not bring children into this world to suffer”.

Charity lives in rural Kubwa Abuja. She doesn’t know when she was first diagnosed with sickle cell. She is a baker and a hairstylist undergoing training. She tells us: “Living with sickle cell has not been easy” As a baker, she spends a lot of time in a kitchen which can have an impact on weather conditions (becoming too warm) which can trigger her crisis. This isolates her from friends and her social life suffers. She told us some of her friends are unaware of her condition due to the stigma of sickle cell in some communities.

 

So, she ends up avoiding them to prevent them asking her questions about her health. When she is a crisis, she is not able to get hospital care due to her lack of financial means. She resorts to self-medicating by buying cheap basic pain relief medicine at the local chemist which doesn’t always relive her pain or subside the crisis.

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She tells us she manages her condition through good nutrition and healthy food to avoid a crisis and the costs that come with one. Like many warriors, exertion of her body can trigger a crisis, so she avoids any strenuous activities in order to avoid having a crisis. Her advice to people living with sickle cell anaemia is that they should invest in eating healthy and taking their medication if they have the means.

She also tells us she has not allowed her health issues define who she is and that she strives to be happy, no matter the situation and that’s how she clings to hope.

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She wants to help younger warriors rise above the disease.

He is about to write the WAEC entry examinations into secondary school. Abdulrahman was diagnosed with sickle cell anaemia at the age of 7. He had his first crisis and was rushed to the hospital where he had series of tests done on him and they found out that he had sickle cell. He told us that was the first and last time he had blood transfusions. He is the only child with sickle cell in his family and he is always in the hospital.

 

He tells us “I am always tired and sometimes feel weak because I can’t do most of the things my mates are doing, and I hate how weak and vulnerable I am whenever I am sick. The pain sometimes is unbearable for me, but I thank God that I don’t fall sick often. I love playing football with my mates but because of my condition my parents forbade me from playing out because they feel like it will exert me and cause another crisis which they can’t afford as I will need to go into hospital which needs money.
 

But sometimes I sneak out and play with my friends and when I start getting tired, I stop and rest and my friends know when I need to rest so they don’t pressure me to play. I am grateful for the friends that I have. They know about my condition, so they try to be understanding. I am training to be a fashion designer and am really working hard so as to be able to have my own fashion house one day and help my family as well.

 

My advice my fellow warriors is to not be ashamed of themselves because they have sickle cell. It’s not their fault neither is it a death sentence. They should be proud that they are stronger than others because it’s only a strong person that can go through to the pain we go through and still come out smiling and surviving like everything is alright”.