32-year-old Esther Oluwatobi Lambe holds a first degree in Biology Education and she is currently studying for a master’s degree. Lambe who is a teacher and an e-commerce and affiliate marketing enthusiast, is a person living with the Sickle Cell Disorder. In this interview, she shares with TheseTimes her experience with SCD, among other things.
When were you told of your Sickle Cell Disorder status? And how did you receive the news?
I can’t remember when exactly. I think I just picked it up from all that was happening to me and how my parents discussed it. The earliest episodes of crisis that I could recollect happened when I was around 5. We were two. I remember I and my late younger sister were always having the same complaints; hers was more severe. As we both grew and had to go to school and mingle with other children, we were made to understand we were so different from others.
There was a day a sister asked me while we were in children’s church,”are you SS?” My mood changed immediately. It sounded like,” are you going to die soon?” I simply answered her, “yes” but that question was what made me all aware of my status till date
Can you describe some of the worst crisis moments you have had as someone living with SCD?
That’s quite hard to tell, you can’t get use to pain. Anytime a full blown crisis occurs, it always looks like the worst, however, if proper medical attention is given promptly, it is arrested early and suppressed. Before I went to the university, I was rarely hospitalised because my parents were educated. My mum had become a self-made researcher because of me, after we lost my sister much early. So most times, I had to wait the pain out with orthodox remedies which were slow but effective in the long run. Those times were some of my worst. I’ve had other severe crisis afterwards, but it’s just hard to tell.
Has there been any way SCD impacted negatively and positively on your confidence and relationships?
Yes, a lot. I grew up with very low self esteem; the kind of stigmatisation and bullying I faced in my secondary school left me with almost zero self-confidence. I was very quiet and I kept to myself most of the time just to avoid anyone saying any unkind word to me. Still some of the things that were said back then still echo till date. Also at the home front, my mum couldn’t help making it an issue, though my Dad was always there to cushion the effect of any negative words. But I wish I never heard them in the first place
When it comes to relationships, it’s been an uphill journey. There were those who backed out because of my status, and there were relationships I had to call it quits with because genotype compatibility is not the only criterion for choosing a life partner. There’s this wrong notion some people hold, and it is that you should be grateful that you even see a man who wants to marry you. But that’s only for those who just want to answer “married “at all costs. As a Christian, divorce is not an option for me so I need to make sure I’m not going to jet in and out of marriage. People who intend to go into marriage with warriors must do so out of genuine love, a great deal of understanding and not just out of pity.
Are you currently in any relationship?
No
Do you think the Nigerian society has enough support system(s) for those living with SCD?
No, I don’t think so; from education and awareness to healthcare, there’s a lot that can be done to support people living with sickle cell. However, with the help of social media, there is a great improvement compared to the past
Do you think SCD can be eradicated? If yes, how so?
Wow… eradicated? That would take a century because as we speak, some women are pregnant with babies having sickle cell. Sickle cell is not a viral infection, it’s genetic. So it’s not something we can wipe off in one sweep. However, with more education and awareness, the rate at which sickle cell babies are birthed yearly can be reduced. Apart from genotype screening and compatibility tests, there are other advanced medical interventions like IVF for those who are already married with non-matching genotypes.
What do you say to lovers with genotype incompatibility, who still want to get married despite the risk involved?
I will address two sets of lovers; the first and the commonest who are the average typical Nigerian, educated or not, average or below average income earners, religious, myopic and sentimental. This is the category of people that believe prayers will stop them from having sickle cell children, who believe nothing must be in the way of their love. I will say, it’s not worth it. The love they so much have for each other would be shaken to the core when they’re faced with the challenges of managing kid(s) with sickle cell. To those claiming faith I always say,” pray for either of your genotypes to be changed to AA first before going into the marriage. Exercise that faith as a proactive measure not on a chances preventive measure later on.”
Then there are those who are enlightened, open-minded, well above average income earners, who are ready to strictly explore medical but expensive interventions to ensure their offspring would not be at risk. We have such options as IVF and Pre-Implantation Genetic Screening (PGT). PGT is to detect if an embryo is having the sickle cell disorder before implantation occurs. The implication of this is that, PGT is a technical way of aborting if the embryo turns out to be carrying the sickle cell gene. So the best option remains IVF.
You keep trudging on in life in spite of the challenges with SCD . How are you able to face life with confidence?
Yes, I’ve been able to overcome many of my challenges with the help of God and my parents. Right from when I was a child, I was taught the power of positive confession and affirmation. I no longer have the consciousness of my peculiarity. As I advanced in age and exposure, I’ve come to realise I only have a diagnosis and that sickle cell is not my identity. By the grace of God, I’m able to do what everyone is doing though it might not be with equal pace and strength. I’m definitely getting things done.
Before my grandma died, she would express the concern that if I had to go to the university like this, they will just send me back home. But with faith that I could do all things through Christ who strengthened me, I went and graduated with good success. It wasn’t a walk in the park.
It is often thought that those with SC may not live long, how can the warriors address their fears?
I used to have that fear but not anymore. To the best of my understanding now, people of every genotype die at any age. I’ve seen children with sickle cell die, I’ve seen youths, people of my age, older folks, people in their 70s and 90s die of sickle cell, which is exactly what’s obtainable in people with other genotypes.
READ ALSO:18 Killed, 16 Injured In School Fire
I want to add here that the sickle cell disease differs in severity. There are factors that contribute to each person’s type and manifestations such as some genetic factor and environment. You mostly can’t compare someone born with sickle cell in the UK to someone here in Nigeria. Also, early childhood care matters a lot. My parents are educated and they left no stone unturned to make sure I grow up healthily. So, there are no hard and fast rule as to how long or short one could live with sickle cell, it all depends on these factors.
Finally, how would you want the rest of the society to look at SCD and people living with it?
I want the society to see us as normal individuals. The narrative has changed a lot though but those who still approach warriors with trepidation and fear, I want to tell them we’re not walking corpses. There are more walking corpses with diabetes, high BP, cancer and other debilitating disease put together than in sickle cell.
People need to stop looking at warriors as if we have the worst problem in the world, as if we’re the ones who need miracles the most. Stop.
Whenever you read our stories, stop giving unsolicited advice of prayer houses and NSSPPD links. Pray for us directly to God instead.
Support us financially and emotionally if you’re in a position to do so. Some warriors cannot work due to complications, yet the they need to survive. They need to undergo expensive treatments. What about supplements and drugs we take to keep fit and going? You all know the state of the Nigerian healthcare and economy. Donate to the sickle cell community .
I would also like the government to make special provisions for the management of sickle cell in all teaching hospitals. Let their be subsidized charges even if they can’t provide absolute insurance.
Conclusively, living with sickle cell has been a lifetime of experience, that I feel like I’m missing out some details. But I do hope this interview enlightens, inspires or encourage someone out there that, a diagnosis doesn’t define a person.
