A sickle cell survivor, Ndubuisi Igwala, 36, who lost his left arm and two siblings to sickle cell complications, speaks to VICTORIA EDEME on the physical, emotional, and mental trauma he is experiencing as a survivor.
Can you introduce yourself?
I am Ndubuisi Igwala. I am 36 years old. I stay in Benin City, Edo State. I am from Amoji in the Ndokwa West Local Government Area of Delta State. Due to my deteriorating health as a sickle cell patient and amputee, I’m not working at the moment. I can’t walk and have been bedridden since June 2023.
What was your occupation before you became bedridden?
I wasn’t working as I visit the hospital regularly because of my health challenges. My health does not permit me to work.
Please share information about your educational background
I have a diploma in applied Microbiology. Then, I did direct entry into the university and graduated with a Bachelor’s degree in Biology Education from the University of Benin in 2009.
How were you able to manage schooling and your health challenges as a sickle cell patient?
It wasn’t easy. There was a time when I had to take a break from school for over a year due to my health. I was able to graduate but I couldn’t go for my National Youth Service because of my health. I was incapacitated to go for the one-year mandatory service.
Can you share your journey of living with sickle cell and elaborate on the impact it has had on your life?
My journey as a sickle cell patient has not been a pleasant one. It has been a painful experience that has deprived me of many things in life. It affected my association with people and my general social life. There was nothing I could do because it affected me so badly. Any little stress triggers joint pains that are extremely excruciating. My case was a very terrible one because I came from a family that could barely afford my medical treatments regularly, due to financial constraints. Low finance was one of the reasons my health deteriorated so badly. After I graduated from the university, my arms were affected with a skin ulcer which led to the amputation of my left arm. The muscles and nerves on my right hand were badly damaged.
Living with sickle cell and undergoing amputation, how has the experience been for you?
In the initial diagnosis of my skin ulcer, I was told that my two hands were going to be amputated. The surgeons did all they could to salvage it and my right hand was saved from amputation. However, I’ll be wearing a cast bandage on my right hand for the rest of my life. The bandage will keep the hand firm because the bones are very weak. So it’s the cast that is holding the arm together and enables me to move and use it. I’ve done up to five surgeries in the past. The main issue I’m having is the financial support.
When you were told that your arm was going to be amputated, how did you feel?
It was as if my whole world came crashing down when the surgeon came to my bed and told me that my arms would be amputated. I was very devastated. It felt like the world had ended for me, as so many thoughts were running through my mind. I was almost depressed. I cried for days. It took me days before I could give consent for the surgery to be carried out. My mum had already given the consent but they needed mine before they could go ahead. So in a way, I was the one delaying the surgery. It was difficult for me to make such a decision.
How do you manage and cope with the physical and emotional pain associated with sickle cell and amputation?
The number one person who gives me strength and the power to keep fighting is my mother. She never gave up on me despite all the pain and suffering she went through because of me. She is my backbone. Physically, the pain is extremely excruciating. I’ve cried a lot of times because of the pain. Sometimes, even pain relief drugs do not work, as my body has gotten used to them.
How have your parents supported you throughout your journey?
My mum has been the breadwinner of the house. She has been the one doing everything possible to make sure I stay alive for her. She’s a primary school teacher. From her meagre salary, she’s been trying her best to take care of me. She also borrows from friends too. She has been my backbone. My dad has not been in the picture because he left my mum, and now has five other healthy sons with another woman.
What made your father leave your mum?
My mother initially gave birth to three children, including me, who were sickle cell patients. My two younger siblings died the same month and I became the only surviving sickle cell child at that time. After the death of my two immediate younger siblings, my mother later gave birth to a boy and two girls, but I’m the only sickle cell patient among them. Two are AA and one is AS. My youngest sister is learning nursing and the other one is on apprenticeship. My brother graduated last year. Despite welcoming three other healthy children, my father still left my mother for another woman and welcomed five boys with the other woman. Due to pressure from his family, he left us and went to be with another woman. His family was questioning my mum for giving birth to sick and dying children.
How have your siblings been supporting you?
They have been trying. Since I’ve been bedridden, they’ve been assisting me. I pass urine in the bucket, and if I want to use the toilet, they assist me. My younger brother stays on his own but I stay with my mum and two sisters.
Since your father left your mum, has he been in communication with you?
Yes, he sometimes reaches out to me but he doesn’t support me financially. When we talk, he asks me how I’m faring and the state of my health. Aside from that, we don’t have conversations.
Could you share more details about the circumstances surrounding the loss of your siblings?
They died of sickle cell complications. I’m the firstborn. The second boy was 12 years old while the third boy was a six months old baby. They died when I was 14 years old. I felt alone after they died. There was an empty vacuum in my heart. It was a very unpleasant experience.
Have you been able to overcome the emotional trauma you experienced after the loss of your siblings?
Over the years, yes. I have let it go.
Regarding your sickle cell disease, who or what do you believe is responsible? Do you harbour any blame towards your parents?
I used to blame my parents for my condition, especially when I was having those complications. They were both AS. When I was younger, I hated them for bringing me into this world. As I grow older, I no longer think that way.
What changed your thoughts towards them?
I realised that it wasn’t their fault. In the era they got married, there was no awareness about sickle cell conditions. So I understood better as I got more mature. I no longer blame them for anything.
Are you doing anything to advocate for sickle cell patients?
In my little way, I’ve been doing that. Every June 19, being sickle cell day, I usually post on my social media handles to create awareness of the sickle cell condition and the importance of knowing your partner’s genotype before marriage or relationship. However, most Nigerians are too religious and they believe God can change the situation for them. In 2023, parents still gave birth to sickle cell children. There are only a few people who take these things seriously.
How have you been managing financially for your treatment?
It has been very difficult for me. I’ve been getting support from friends on social media and other people around have been supporting me with the little they have. That is how I’ve been able to fund my medical treatments. I spend over N100,000 monthly. The money for the surgeries that I did in the past was donated to me by people on social media.
Do you have friends? How have they been of support to you?
Back in my university days, I had friends, but after my health badly deteriorated, they were nowhere to be found. Only one guy stood by me. In my secondary school days, there was only one guy that was doing his best to help me. These are the only people that have been with me from day one. I don’t have friends. My extended family even abandoned me and I’m not getting any support from them. I only get help from people who do not know me personally.
How do these benefactors know about your condition and offer to help?
It’s mainly through social media. Some of them were told about me. Some people who have empathy would tell their friends and family, whom they know can support me in any way they can. If not for these people, I would have been dead by now. I’ve been surviving on the money I get from anonymous donors.
In your condition, have you encountered situations where you felt discriminated against or treated unfairly?
Yes, such has happened many times. I was stigmatised when I was younger and all through my schooling years. A lot of people made comments on how ‘tiny’ and ‘bony’ I looked. I was bullied for my physical appearance. It’s a regular thing in Nigeria and still happens to date.
Have you ever challenged those who stigmatised you or responded to those remarks?
Sometimes, I do react to those remarks. While I was younger, there was a time I almost fought my bullies. But now, I sometimes call them out on social media. The ones I call out on social media are not those who directly make mean comments to me. Those online trolls often make awful statements about sickle cell patients. Every sickle cell patient will react to such a statement because it’s hurtful to be bullied by fellow humans. So It’s not just about me. It’s about what sickle cell patients go through. When we (sickle cell patients) see people downgrade us, we tend to speak up for ourselves and educate them, to mind the words they say.
How do you navigate and cope with discrimination, particularly about your amputation and sickle cell condition?
I don’t pay attention to those things anymore. I just ignore such actions from people.
Have you found any particular coping mechanisms or strategies that have been effective in improving your overall well-being?
I listen to music and watch movies to distract me from my pain. It helps me mentally. I prefer not to pay too much attention to my condition or feel sad or depressed about it.
Have you ever been depressed?
I’ve never been depressed but I sometimes find myself in a situation when I’m almost depressed. Most times, I don’t give in to depression.
What gives you the strength to withstand depression?
There are some people I see that are in worse situations. Seeing such people gives me hope to still stand strong and not give up. When I see how they carry themselves despite their condition, I feel motivated. So I choose not to give in to any depression or sadness.
Looking ahead, what aspirations or goals do you have for your future, considering your health challenges and experiences?
In my younger days, I had some dreams and aspirations. There were things I wanted to achieve. I had the dream of getting my Master’s and doctorate and travelling abroad. My childhood goal was to become a neurologist. I was very good at science-related subjects back in school, so I wanted to become a professor of medicine. Looking at my situation, however, I don’t think I can still fulfil such goals. There’s no way I can achieve those dreams anymore because my health has deteriorated. But due to my current state, I would love to start up a fish farm, if I get financial support.
Why did you choose fish farming?
It’s a lucrative business that doesn’t involve much physical presence. I can run a fish farm and not be physically involved with the processes, provided I have people who can work under me. I can have employees feeding the fish, washing the pond, and doing other maintenance activities.
What support do you need?
I need financial support so I can get back on my feet and walk again. My current state will require about N15m to put me back on my feet. I arrived at that amount due to discussions with my doctor. I am supposed to be admitted to a hospital at the moment, but I’m at home due to financial constraints. So the doctor said it would take up to that amount to get me back on my feet. As I’m at home now, I still need financial support to get my treatments regularly and dress my wounds. I need N4,000 daily to dress the wounds on my legs and tailbone. My monthly medications cost about N5,000 monthly. So far, my mum and some friends on social media have been assisting me.
