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The Adult Child struggles with a genetic blood disorder

I only started openly discussing being born with Sickle Cell Disorder a few years ago.  Before then, it was just on a need to know basis. If you weren't family or if you hadn't helped me through a painful crisis,  you didn't need to know. I'm not ashamed of it and I was never taught not to talk about it. In fact, my parents never really taught me how to speak to others about it. They were just busy trying to keep me alive and paying outrageous medical bills.

I am also not sure that I know how to discuss the topic without avoiding pity. There's that moment when people discover and they give you "eiyaaaa eyes". Then you now start feeling like an egg,  a breakable sometin shaaa.

 

Pity is not the same as empathy so I do appreciate the people who are empathetic and still treat me like a normal fully functioning human being.

It's also not easy explaining to some people why your leg hurts but you didn't fall down or hit it against anything or how you could be fine now and in the next minute, you're rolling on the floor/bed screaming in pain. 
H'aunty! H'uncle! Das jus the way it is mehn

It's strange behavior to some people. You could just be seeking attention, or maybe you're a weakling, you're soft. You need to man up! Eheeeeen!  To that Ghanaian nurse who was yelling at me to stop crying and behave myself years ago at North Ridge clinic in Accra; "no that is not how Nigerians are! How dare you Madam!!! I don't know how you became a nurse if you do not know how to handle a patient in pain and... your wig was ugly"

It's World Sickle Cell day and so I thought I would give it a shot and share a little bit about my experience being Hb SS. The whole science of it, dumbed down, is that the disorder is genetic and it affects your red blood cells in such a way that they take on a different shape when they're produced. That's the sickle shape. You know what a sickle is if you're a farmer or if you remember your Agricultural science. 
This is the farm tool
This is an illustration of what the red blood cell looks like

 Because the red blood cells are so oddly shaped, they have difficulty passing through blood vessels and such and that's what causes painful episodes.

Fun fact: I have had a painful crisis nearly everywhere I have been to: church, school, my office, sleep overs, your house(i might have not told you), the airport, every country I have visited.  I have sha never been in an ambulance yet so...score!!!!

There are different kinds of painful crises and they generally affect the limbs, joints and such. SCD also makes you susceptible to infections and there are complications from it and that's what kills most people living with the disorder. I have had only one complication: Acute Chest Syndrome and recently, a chest infection that affected my aortic valve, I was told (I was out of it a lot so pardon me if i was not listening).

Ironically, stress is a trigger for a crisis which is really messed up because living with the disorder is a very stressful condition in itself. You will just be avoiding stressful situations like you were in a minefield. You can't be too hot,  you can't be too cold, you can't exert yourself emotionally or physically(alas, my dreams of body building have been dashed), you have to drink a tank of water every day(a constant struggle of mine), you have to take drugs everyday for the rest of your life(Codeine is nice, i like codeine but it has killer side effects). To crown it all,  I'm NIGERIAN! That's stressful on it's own mehn.  We have had rubbish power supply in my area since May! Fashola, what's happening??? Eko is starting to baje oooo!

With all the depression, pain and fear that's  attached to having this disorder, I am still grateful that my parents had me. I see a lot of people comment on blogs or posts about SCD and advise non AS and AS pairings so that there will be no more children born with SCD. That's fantastic. Someone even suggested terminating a pregnancy once it was discovered that the baby would be born with the disorder. 

Alrightyyyyyy then! I have not fully come to terms with how I feel about people trying all these things just to avoid having a child like me, but I do understand the fear. However, as cautionary as people should be, they should also be better informed. There's this thing called probability which means that it's not certain that whenever couples with the AS genotype get together, they will birth a "sickler", it's a chance. In fact,  it's a 25% chance. There is still a one in four chance that your child will not have the disorder.  Still I respect that you may not be willing to take the odds. Just have all your facts first. Visit a counselling center (National Sickle Cell Center, Idi-Araba) and make an informed decision.

NO this does not mean your fourth child will have SC or that one of your children will. It means there is a one in four chance that you might have a child with it and a one in four chance that your children might be affected. Also means there is a one in two chance that your children end up being AS. Chance chance chance chances!

We have come a long way with information on the disorder from when we used to call children with SC "abiku" and "ogbanje". There's even a cure now, a bone marrow transplant so that you will be producing fresh, juicy, sparkly, well shaped red blood cells. Sexy red blood cells. It's a very manageable disorder. You can still live life to the max, just...at your own pace.

One thing people living with SC need is a strong support system, so check up on that person you know who has this disorder once in a while. Don't go and be giving them "eiyaaa eyes " oooo. I know  that there's a special place in my heart for everyone who's ever helped me through a crisis.  I'm naming all my children after you.

They call people living with SCD "warriors" now. That's apt because it is a battle. It's been 27 years(19! I mean 19 years!!!),  no stroke, no leg ulcers and amputations, pulmonary hypertension, eye damage...etc (just a few complications from SCD) aaaaaaand i walk out of every hospital! It's clear that I'm definitely winning this battle.

A Nigerian film maker and family friend of mine(i must famz!) did a series of interviews with people living with SCD and released it today to mark World Sickle Cell day. Check out the first interview.



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