On this years World Sickle Cell day, one of our Sickle Cell Survivor, Rory’s Mum, @Chrystyn90, a pediatrician shares her story of what it is like to grow up as a sickle cell child. This hopes to bring more awareness to members of the public on what it is like to grow up with SCD.
What is Sickle Cell Disease?
This is a medical condition that happens when by there is production of abnormal red blood cells by the body. These abnormal cells cannot survive like normal red blood cells, and hence, they do not last long.
When this happens, it leads to Anaemia (known simply as Low Blood volume in the body). This anaemia is known as Sickle Cell Anaemia. Read more here.
My Sickle Cell Story
I was a sickly child, and I got called all sort of names for that. I still remember some of those names. My first 10 years was manageable, but shit got real afterwards. I got into Jss1, I was in the hostel. I cant count how many times I had to be admitted in the school clinic. Sometimes I stay at my guardian’s place. For me, it was always bone pains, always.
That went on throughout secondary school. One day you are fine and kicking and the next day, you cant manage to get yourself to the loo without help because you are in severe pain. No word can describe a sickle cell crisis. Excruciating is just skimming the top.
I found myself asking God why me?
What did I do wrong to deserve this kinda pain. I blamed my parents secretly and openly one day when I couldn’t take it anymore. I remember praying for death to take the pain away. In fact it was a regular prayer for me when I have crisis. One day my mum heard me and burst into tears.
Then I got into medical school and it just was like, my condition worsened. I was always having one pain or the other. I didn’t take life serious because I always had it at the back of my mind that I would soon die anyway. The talk then was that once you get to the 30th birthday mark then you have escaped sickle cell disease but I always thought I wouldn’t even get there.
Now i am there and I know better. Sickle cell doesn’t leave. It’s in the blood. I had a change of mind in 300level, I decided I didn’t wanna die anymore, I stopped praying for death to come, I started taking my studies seriously, I told myself even if I ended up dead, I want to make an impact helping others like me. My condition is not as bad as some others but that doesn’t make it less painful.
When I tell people my genotype, the response is always you don’t look like one, are you sure and I say I have Vaso-oclusive crisis to show for it. I remember falling ill while prepping for final exams. It’s still the worst crisis yet, I had stressed myself and pushed beyond my limit. I was on admission for several days. Doped up to the brim. Funny how those days are still on the list of my happiest moments in life, not because of the pain of course, but because I realized I had great friends and I was deeply loved by them.
Things got a little better after school, I had fewer crisis then got myself my own personal physician. Pregnancy was not without its troubles but yes I scaled through. Then labour.
I started having the worst possible crisis in labour, I kept shouting that I was having bone pains and they all thought it was labour pain. I know the difference goddamit. Labour is super painful you would agree with me but this was more. Baby came out and that was when they believed me because I was still in pain. I got pain relief afterwards.
Over the years, I’ve learnt to manage the pain, avoid triggers and live the best life, kicking butts while at it. I’m not letting this limit me.
So, do you know your genotype?, what about your partner’s. Are they compatible? You don’t wanna subject your children to this kind of pain believe me, you don’t.
And it’s not just the pain, a lot more can go wrong. You can learn more about sickle cell disease here. Stay tuned and learn more before you commit to that person.
BE ENCOURAGED, THERE IS NO AGE LIMIT FOR SICKLE CELL ANEMIA. MEET THE OLDEST SICKLE CELL SURVIVOR IN THE WORLD.
She is Alhaja Ashiata Aduke Onikoyi-Laguda. Born on the 1st of November, 1925. Mama is now 95 and counting. She is a Nigerian and says she wants to live till 125 years. A very cheerful woman.
Ask any confusing questions you might have below, and i would try to answer them as soon as i can.