Once Upon A (Sickle cell) Crisis

*Long Rambling Alert*

It was my penultimate semester and the day started like any other Thursday on campus for me. I joined my best friend / course-mate -Timmy to go join the other ‘Cadets’ for our early morning routine, jogging round the campus, singing and then converging at the sports complex for the last lap of our parade. (Ask me who or what we were training for)

You see, we were members of the Federal Road Safety Corps on campus and we took it very serious. It was also a way of keeping fit, back then.

And then, as we pounded to a stop at the sports complex, I felt a sharp pain just at the base of my spine. It subsided almost immediately and I felt it must have been my posture.

And then it started immediately, again, spreading upwards, snaking its way up my back and then down again to my legs…leaving no nerve untouched.
My back, chest, fingers, waist, palm, feet, joints all became engulfed by an imaginary intense fire. In a split moment, I was sprawled on the ground, writhing in pain on the green grass that had endured the thump of many hooves and spittle of many tired lips.

My friend was distraught and so were the other entire corps member who had no idea what was happening to me. Everything occurred in a blur and shortly after, I found myself at my second mum cum guardian’s place, off campus. God bless her kind soul.
She it was who took care of me, got a doctor to see me as an ‘outpatient’ and the round of treatment began. She it was who also refused vehemently when sweet mum came to town to take me home.

Total time lost on account of that unexpected ‘crisis’ was 2weeks. And to think it was close to my second semester exams. Of course I ended up missing some tests but I pulled through. Thank God.

Doctor’s diagnosis: Acute Malaria.

Ever been around anyone that suffers from sickle cell anaemia?

Sickle cell disease is an hereditary condition which results in the red blood cells assuming an abnormal sickle or curved shape.

Whereas ‘normal’ red blood cells are flexible disc shaped and move freely through the vessels, not so for these abnormal red blood cells which would often get stuck in blood vessels, cutting off oxygen supply to other parts of the body which would in turn result in severe pain or crisis.

In the most severe cases, it could result in organ damage and deformations shortening life expectancy and reducing the quality of life.

The earlier described scenario is a brief description of what ‘sufferers’ experience every time they are down with ‘crisis’; the frequency could be as high as monthly or bimonthly as the case may be.

Now, I enjoy a graceful life.
By graceful I mean, I have not had it so rough in the last couple of years but that does not detract from the severity whenever it came.
Been through the severe as well as the mild.

You see, there were two of us in the family that bore this burden. Note the use of past tense because we don’t suffer anymore, we are free so to speak.

At least I haven’t had any severe bout since that last incident several years ago and I pray never to experience such again. Amen.

Now back to the two of us in the family. My sister had the severe type while mine was mild. So long as I (didn’t) don’t exert myself unduly, expose myself to extreme weather then I’m ok but not so for my dear sister.

The attacks would come out of ‘nowhere’ with no warning and for days, she would be in pain, constant pain. It could affect any or every part of the body (all at once), without warning…arms, palms, back, chest, legs, fingers, toes, buttocks, nails (yeah)…every part on fire.

Manufacturers of Robb, Aboniki all those dem balms should really compensate us for our unwavering loyalty to their brands in years past…

The pain is really better imagined than experienced.
Try imagining the combo of intense labor pain and acute menstrual pain for days (or weeks) on end with no respite and you’d get to understand a bit of what I am trying to describe.

Don’t even want to think of the years lost in managing this illness or the number of drugs and medications I’ve chucked down. And we were both not even SS, we were SC!

Daily intake of Folic Acid, vitamin, B, Pentax, Novalgin, Analgin…name it. It’s a miracle that we are not ‘drug-addicts’. Those drugs took a huge chunk of dear mum’s meagre teacher’s salary back then. God bless her soul.

(Multiple doses of) Valium 5 to aid the ever elusive sleep and Hot water compresses to manage the pain.
Ha. I remember how hot those water always were. Imagine water hot enough to skin a chicken in just one dip.

We eventually learnt to take care of ourselves and avoid crisis triggers and the likes.

Now I am a mother, married to a wonderful man and I’ve had 2 uneventful pregnancies while my sweet big sis is also married with 3 kids – all delivered full term, naturally. Halleluiah.

If I don’t tell you, you’d never guess in a hundred years.
It was not easy back then managing the condition but God in His mercy saw us through and brought us to this level where we do not have to deal with this anymore.

Some do not have it easy or good with many (sadly) succumbing to this disease along the way so I do not take this lightly.

Now, what brought back this memory?
I was chatting on blackberry with a very good friend of mine a while back. He is more like a ‘soul’ brother in whom I am well pleased and as usual we got to chat about his relationship.
Turned out he was at crossroads and needed some very good advice.

You see, my friend’s genotype is AS while his fiancée’ too is AS. I could very well empathize with him on the pressure to get married, you know the blessing of being an only son (whose mates are already signing out of the childbearing game) with a very good job and dear mum breathing down his neck.

Some people are so lucky, aren’t they?

Did I mention that my friend is also a ‘man of faith’? Yes, he is. Very much on fire for the Lord is he.<

He loves her so very much and is convinced she is the one for him.

And now comes the million dollar question: Should he go ahead and marry her in faith or just let her go?

Now I am not a genetic or medical expert or counselor but based on my experience, my position is pretty much predictable, didn’t have to think twice to respond.

While accepting that it’s not a death sentence, however going ahead means they have a 25% chance of begetting an SS child with each pregnancy. Now that’s pretty high, IMHO.

I do not think its worth it in this part of the world where we don’t have access to ‘sophisticated’ medical care to go ahead. Yes I believe in God but I also believe he has given us our brains, intellect for a reason. We have all the tools to take right decisions right here with us.

I also believe there’s the place of faith too.

Yours truly spent years rebuking (SC) and claiming (AA) and all in faith but I have come to accept my genetic makeup as it is no longer inhibitory in any way now and it has contributed in making me the person I am today.
Even if it is still inhibitory, would definitely not feel differently.
I have also grown to understand that His ways and thoughts are not mine even though He has the best plans for me.

Those medical tests we took as part of the admission process in school didn’t help either.

Naija I seriously hail thee.

Imagine after sessions of praying, binding and loosing, going for tests and having the damn report read ‘no trace of sickle cell’ and I believed with all my heart to the point of testifying!

Didn’t know any better until years later when I started antenatal classes and had to do the compulsory blood tests.

Was my faith shaken as a result of this? NO.

Was I disappointed? YES.

Did / Do I doubt God’s ability to perform miracles? NO.

I still believe NOTHING is impossible for Him. Absolutely Nothing.

And I sincerely believe all I’ve been through in life is from the giver of life who wants me to learn from my journey.

My conclusion is this:

Where ‘this’ sickle cell disorder / disease is concerned, intending couples should pray and think very deeply, they should bear in mind that it is not all about themselves.

They should give a lot of thought to the offspring(s) the union will produce and what lies ahead and I say if you are not fully prepared to be dealing with a double dose of what I described above on a weekly or monthly or quarterly basis; doing constant hospital runs, devoting a percentage of your earnings to drugs and hospital bills not to  mention the physical, mental and emotional trauma, then don’t do it.

If you don’t have a well laid out management plan inclusive of quality healthcare or a good support system, don’t even dream it.

While not using my experience to entirely judge but when you are around a child plagued with severe sickle cell disease, you would definitely have a rethink.
Not fair bringing kids into the world to suffer when you are fully informed and educated. Even those kids could turn round to blame one in the end.

You know it’s one thing to be educated and another to be informed, right?

Some of our dear parents have an excuse, they did not know all about genotypes in those days and even though mine were fairly educated between them yet they were not fully informed back then.

When dear mum’s eyes opened…like they were wont to do in the face of pain, her constant advice was before you get into any relationship, the second information after his name is his genotype…lol…and of course pray hard. (In her words, ‘pray now so that you would not have to pray’)

Except maybe carrier couples could get together, forego the thoughts of having biological kids and tread the adoption path in order to eliminate the risk of having sickle cell carrier kids which I don’t think is much of an option in this part of the world anyway.

What do you honestly think about this and how would you advise anyone in such a predicament of choosing a life partner considering the risk of begetting sickle cell anemic kid(s)?

 

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16 thoughts on “Once Upon A (Sickle cell) Crisis

  • September 20, 2013 at 10:38 am
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    Wow! When we walk through water and fire, He is with us…
    I am so glad to know this, I have seen a little girl in crisis and my heart was broken for her. Praise God for you and your sister, a testimony I would love to spread to those who face the situation you FACED.
    I stand with you on your friend's marriage decision. They should love themselves and the babies and marry other people. Except they get a clear go-ahead from God, if they do, then God has a plan.
    God bless you sister!

    Reply
  • September 20, 2013 at 10:20 pm
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    I would never have guessed this in 200 years…Thank God for your life, friend. My question is: What did you do to avert this crisis? Is it prayer or you grew over it? Really need help on this matter. There is a home that is about to scatter!

    Now my advice for your friend: Stay out of that relationship, the wounds will heal. A broken relationship is better than that of a home! Like Ugochi wrote, except you have a clear go-ahead from God.

    And to the singles out there, please do your HB genotype as soon as your relationship is getting serious or may be as you meet him/her.

    Bless you Biola, you are a material!

    Reply
  • September 21, 2013 at 6:29 am
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    I really wish people in such situations would have the opportunity you had. Having a first hand experience of what its like would significantly aid decision making. At least you are better prepared knowing what is ahead…no?

    Thanks for visiting, 'sistafriend' (in Salt's words).

    Reply
  • September 21, 2013 at 6:49 am
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    My sweet friend, honored to have you here…

    I don't know what I did myself o…lol…But I can tell you lots of prayer, 'management' and a little of 'growing over' it.

    Let that home not scatter o..I believe if we already mutually make the decision to come together 'for better or worse' then we should stick together and wade through the waters regardless of whatever we face therein. But well, what do I know? I pray they find the strength and grace needed to stay together.

    A number of things that could really help:
    – Increase fluid intake. I drink lots and lots of water and fluid. Mummy impressed this on us in those days, so first thing in the morning I take water and then all through the day. Hubby is always on my neck to take at least 2 big bottles of Eva water while at work (during the day).
    – Avoidance of stressors (stress)
    – Rest (very important)
    – Good diet
    – Avoid smoking and alcohol
    – Avoid activities that would make excessive demands on the body

    'A broken relationship is definitely better than a broken home'. WORD!
    I just hope someone out there would pick one or two pebbles of wisdom from this.

    Thanks for coming by, Mayor.

    Reply
  • September 22, 2013 at 8:03 pm
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    Thank you sweetheart. I will talk to you soon.

    Reply
  • September 24, 2013 at 2:20 pm
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    God bless you and continue to uphold you. God definitely has given you a testimony in the midst of the trial.

    Your post is a confirmation of God's endless mercies.

    Reply
  • September 25, 2013 at 7:34 am
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    Wow Abi. I have so many questions. You and your sister are amazing women. You are both physically and spiritually strong. To have weathered this is a true testimony. Please excuse my ignorance. I must fix it by asking, is the incidence of sickle cell very high in Nigeria? Is it regular procedure to get tested for it when you go to school? Do couples generally get tested for it before they get married (genotype)?

    Reply
  • September 25, 2013 at 7:29 pm
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    Looking forward to that, we really need to talk.

    Reply
  • September 25, 2013 at 7:31 pm
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    Indeed, His mercies know no end.

    Thanks for coming by, Sykik and God bless you too..

    Reply
  • September 25, 2013 at 7:58 pm
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    Thanks for visiting, Chuwechuwe.

    As for being amazing, it's God o. We just take each day as it comes, basically. And as for physical and spiritual strength, personally, I consider myself a 'work in progress', not there yet.

    Just try and google this, the statistic would shock you. As usual, Nigeria no dey carry last, we are not 'big brother africa' by mouth…

    Seriously, over 150,000 children are born with this disease annually in Nigeria. Shocked yet? 'We' carry the highest burden globally, according to available statistics.

    I'm not sure its a general requirement or pre-requisite for admission in Nigeria but in the institution I attended, everyone was (not sure if they still do it) required to undergo medical tests. The shoddy job apparently being done has ensured the failure of this simple process in addressing whatever objective it was originally meant to address.

    Although there is no cast-in-stone rule regarding this but Couples are generally expected to get tested before getting married, but few actually consider this absolutely necessary.

    Phew. That was one looong response…lol

    Might do a full follow-up post with the input of a medical personnel to put out more info and probably create more awareness in my own little way.

    Reply
  • September 26, 2013 at 7:31 am
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    150 000 children!!!! The numbers are huge. I am truly shocked. Consider me wiser than I was before reading this post. I think awareness of the disease is relatively limited in the lower half of the continent. I can't help but wonder if its because our numbers are lower or because we are not looking. Now that I know, I shall let others know. Thanks Abi.

    As for the work in progress…it's looking good from where I'm standing. Keep it up and look after yourself. We are all richer for knowing you.

    Reply
  • September 29, 2013 at 11:44 am
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    I can't guarantee the accuracy of this proposition at this time, but I once read that every man/woman has more than one soul mate apportioned to them. Based on this, and the evidence you have provided, I think it would be absolutely vital for your friend to cut his losses and try to move on, for the sake of his future kids obviously.

    Now although I have biological sisters with the disorder, still, I can only imagine how difficult their lives have been made by the disease. They are remarkably strong like you and your sister appear to be, and I respect them dearly for it; but at the end of the day, this crucial piece of advice is not for those of us without the disorder to give, we cannot speak from personal experience. Thus naturally, I think your friend will be best advised by someone who has had a first hand experience, as theirs will be 100 fold more sincere and authentic, and they can lead him in the right direction.

    I wish you and others concerned, unending strength and excellent health and I pray that someday soon we will find a sustainable cure for this disorder.

    Thank you

    Reply
  • October 1, 2013 at 6:42 am
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    The associated difficulties are better experienced through the lives of others for the disorder to be fully appreciated. I really do hope everyone would take responsibility for themselves as well as the lives of their unborn and make informed decisions.

    Thanks for your kind comments / wishes.

    Do have a super blessed day.

    Reply
  • October 11, 2013 at 1:51 pm
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    How did i miss this post? Thanks for checking on my blog. I'd do the needful soon.

    I once asked a potential 'mate' what his genotype was and he said he didn't believe in such. I was shocked and then i launched into this really long speech about the importance of knowing your genotype. Mr. Bobo insisted he was not bothered. Needless to say, that friendship didn't get past that stage.

    Reply
  • October 12, 2013 at 7:59 pm
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    Mr. Bobo is suffering from selective ignorance.

    Please do the needful before the 'final commitment', its highly imperative.

    Thanks for stopping by (and stop 'falling my hand' by missing subsequent posts).

    Reply

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