READ THIS YOU WILL BE CONVINCED

By Chukwuma Muanya

Governments' involvement

Many Nigerians still have the notion that government should or would do everything even when the contrary is evident. I personally feel that we, the people, should take pride in helping to solve our own problems. We have bright people who can make a difference if we provide the right conditions for them to work in this country. We should modify our priorities; spend less on celebrations and more on programmes that would contribute to human advancement.

We chose to be a non-governmental organisation because we felt we could then be more efficient, more responsive and more decisive.

Eradicating sickle cell in Nigeria

It is a popular but rather simplistic expectation that sickle cell disorder can be eradicated in Nigeria. It is communicable diseases such as small pox that lend themselves to eradication. Small pox ravaged wide communities in Nigeria and was not eradicated by the usual claims of herbal cures, but by vaccination which was the outcome of serious scientific research. Other communicable disorders that can be eradicated in Nigeria are proving more difficult to do for a variety of logistical reasons, even when the knowledge to do so and the means of accomplishing them are available. Polio, tetanus, malaria and tuberculosis are some examples.

Non-communicable disorders with a genetic component such as hypertension, diabetes, asthma, albinism and sickle cell anaemia are less amenable to eradication and more amenable to better management and control which can reduce prevalence, reduce illness and complications and prolong life.

Unfortunately, because it is known that sickle cell anaemia can only be inherited by the contribution of Sickle genes from both parents, many Nigerians naively believe that marriages at risk of producing affected children would always be avoided where the partners are aware of their shared risk. In reality, this is not true. Many educated couples make an informed decision to marry themselves despite the risk. We who work in the field encounter this all the time. People with SS and AS or SS and SS have married each other. We tend to judge others too readily and assume that marriage is only for procreation. I would share the following report made by doctors in UCH Ibadan with your readers.

Proper genetic counselling fully informs the clients and allows them to make informed choices which should then be supported. In the cases related above, the patients made informed choices, which is what people do. It surprised the doctors because they believed otherwise until put to test. In reality, one cannot talk of some marriages being medically incompatible. You could extend this to diabetes, hypertension and more.

An attempt by a military governor, Nwosu of Oyo State, to legislate by decree, against marriages between couples who both have the sickle gene was thwarted when the meeting of the Attorney-Generals of the Federation of Nigeria declared it against human rights to which Nigeria is a signatory.

The reality is that with one in four men and women carrying the sickle gene, one in 16 marriages randomly contracted will be between carriers of the gene and be at risk of producing affected children. With modern management and treatment which includes newborn screening and prophylactic treatment these children are likely to live to adulthood and become useful members of the society. To cut a long story short, if affected people are exposed to modern treatment and to results of future intense research, sickle cell would shortly become another chronic disorder that one can live with to old age.

Forced marriages have never eradicated any genetic disorder in the world. It would breed enormous stigmatisation that would be disruptive and counterproductive. Even if it were possible to ensure that all persons with AS only married people with AA, the prevalence of AS will increase in the population, making the future births of people with SS more difficult to avoid. The unthinkable way to eradicate sickle cell anaemia would be to commit genocide of all carriers of the sickle cell trait or collect and banish them to far off lands, never to set foot again on Nigerian soil.

Think about this. Sickle Cell was introduced to the USA five to six hundred years ago with slavery. Now, only one in 12 African-Americans (eight per cent) are carriers of the sickle trait but over 2,000 (two thousand) children with Hb SS are born in America every year. If they, with enormous resources, have not eradicated sickle cell anaemia, why do people think we can easily do so in Nigeria?

Gene therapy and sickle cell

Gene therapy can beneficially modify the S gene but a lot of research and money is still needed to achieve it.

Advice to couples with sickle cell trait

The chance of couples who both have the sickle cell trait having an SS affected child is 25 per cent or one in four in each pregnancy. This is the same chance they have of producing a child with Hb AA. The chance of having a child who, like them, would carry the sickle cell trait, is 50 per cent or one in two. Put differently, they have three in four (75 per cent) chances of producing a healthy child AA or AS in each pregnancy.

To return to your question, I would advise the couple to make an appointment to see a trained counsellor in the National Sickle Cell Centre. If they are not resident in Lagos, the Centre will provide contact details of other certified counsellors near where they live. If the couple decide to marry themselves after counselling they would receive our support and we shall help to guide any affected children produced to safety and longevity with modern day knowledge.

Bear in mind that among people with Hb SS are doctors (including the co-author of my book on 'How to Live with Sickle Cell Disorder'); lawyers, politicians, engineers, technicians, high court judges, caterers, businessmen and women, state commissioners and I am informed, a state governor. They deserve to be treated with respect and support and not be regarded as objects of pity. In the foreseeable future, sickle cell anaemia should become a stable chronic disorder that can be controlled like say, hypertension.

Already, with oral prophylactic penicillin in childhood, malaria prophylaxis, and daily hydroxyurea, affected people are living longer and enjoying a significant reduction in the frequency and severity of sickle cell crisis and related events.

Drive and motivation

Having trained in England, when I joined the Lagos University Teaching Hospital, I unexpectedly encountered very many patients with sickle cell anaemia. I soon realised that most of them had no grasp or proper insight into their condition and this was making coping with it more difficult. I then created a distinct adolescent/adult Sickle Cell Clinic and introduced counselling and then counselling training. From then, one thing led to another and I soon realised that to achieve anything one had to focus and in this country be resilient and persistent. I recall my late father always saying "Anything worth doing is worth doing well" and "Good name is better than gold". These principles have helped me. Also, the sheer courage of sicklers and my conviction that with adequate research we can prevent or effectively abort their painful episodes and other complications have impressed me.

Uncompleted Sickle Cell Centre

We shall become fully operational as soon as we raise enough funds which we plan to do soon after the entire building is completed by June 2008. No amount is too small to donate. Also, a list of our requirements which we hope Nigerians will help us provide are available on our website: www.sicklecellfoundation.com


I wonder y nigerians are so myopic bout the sickle cell thingy.

o Boy, let me tell u the naked truth.there is nothing like miracle in this case,pls don't put God in test.if u marry that girl,then u must be the most stupid man on the face of earth,because u must regret it till the end of your life.it is like person wey see shit,still come march am.pls save ur unborn children the pain and the agony of been sicklers.ask any ss you know how he feels or what he sees when in crisis.wishing u the best of luck.

its sad really, But the truth is u need 2 start afresh, 5years is long but trust me raising a sickle cell child is nways u can do it i know i did!!!
goodluck [b][/b]

Raising a sickle cell child is a piece of cake compared to being a sickle-cell child. Don't be selfish.

thanks for the insight tobaina and shaz !!!
@ poster, read more, learn more and research more on the topic.

Really, nothing do you and always know that, you have 75% chance of having a very healthy kids ( In this context , AA and AS) but, are you up to the task of having SS kids?  And thats a reason why u have to read more, learn more and research more.

Personally, i dont have any problem with AS stuff ! I am AS and my Wife to be is AS and infact, we are engaged already !!!
Medically, i am so okay with what i have learnt and know about AS and AS combination !

The koko is, if u are not convince enough to want to go on with the relationship, make sure you talk about it extensively with your babe and then, embrace other options which are readily available.

I wish you the very best of Luck.

Cheers

[quote author= MrCracklesNah i disagree with you
I have seen an "SS" patient before, pitiable site!
At the same time, i know and i am an "SS" patient, if i could have videoed myself growing up and played it for u, u will be envious of what i am today!
It is not ignorance nor is it selfish, quit! MrCrackles 
[quote][/quote]

make i hear word jare
living testimony ko alive testimony ni
man it ain't dat easy oo

Not bad in it, just go ahead with God all things are possible.

2 options, leave her or go ahead and never have children of ur own(adopt)

Why are Nigerians very good at making ignorance a thing of beauty? It is either they know it all but knew absolutely nothing or they are impetuously hyperbolic.

Like the poster MrCrackles has stated, most persons declared as SS end up having a normal life. Nigeria and Africa have more than 70% of couples who are AS. Such union did not translate into the end of Nigeria or Africa.

Also as Shaz has rightfully stated, it is a matter of biological probability. In case of AS marrying AS, the odd is 75% of having a normal child to 25% having a child with blood disorder. Even within that 25%, with modern technology and advancement in medicine, 10% has sustained a normal life.

Crackles, sorry cracker oh sorry oh sigh MrCrackles, how are you today?

you know the person that likes calling you cracker Brash

70% wow. instead of us in Nig to work on advancement of life of those with the disorder, they are looking for the easy way out, the usual

u have seen n heard it all
do wat u feel is right tho that is very obvious

This is the Sickle cell poster child as against that malnourished childs pix that was pasted in previous pages.
T-Boz, member of the R&B group TLC.
She has SCD and is the spokesperson and poster child for Sickle Cell Association.
She was once listed by Peoples mag as one of the 50 most beautiful women in the world.

Point is SCA is not all about doom. T Boz is a superstar and a celebrity.
She does go through painful crisis though, but she's been able to rise above them and b'come a star.
I still will not advise people to take risks that can lead to SCA.
But if it happens, it ain't the end of the world. T Boz is a living example.

T boz

I dont usually contribute to Nairaland, these days. Your topic however made me to.

Please, for God's sake. Do not tempt God. Run and take cover. It's better imagined than witnessed. I am talking from personal experience.

A family friend had 4 issues, 3 SS and 1 AS. They lost two (one 20+, the other about 30) of them in three months. It was diverstating for the entire family.

So, love now walks with two open eyes and is no longer blind.

Do not because of your own selfishness jeopardise the life of your children.

It might be difficult but prevention is better and safer than cure.

May God give you the wisdom to act

Prodigy, another poster child of SCA
Member of Rap group Mobb Deep. He has a long where he talks about the pain he goes through from SCA.

spora1:

I dont usually contribute to Nairaland, these days. Your topic however made me to.

Please, for God's sake. Do not tempt God. Run and take cover. It's better imagined than witnessed. I am talking from personal experience.

A family friend had 4 issues, 3 SS and 1 AS. They lost two (one 20+, the other about 30) of them in three months. It was diverstating for the entire family.

So, love now walks with two open eyes and is no longer blind.

Do not because of your own selfishness jeopardise the life of your children.

It might be difficult but prevention is better and safer than cure.

May God give you the wisdom to act

Thank God you said Family Friend.My Parents are AS,And all three of us are AA. There is a 25% chance of having an SS and that is not guaranteed but Likely.

There are risks in everything i this Life. There is a Risk that Women die in Child Birth, So do you decide not to impregnate your wife?

AA children born with Downs Syndrome or AS children with Birth Anomalities?What do you do?

Very few things in Life are 100% positive.

@ Brash! I dont realli know wot to say to all ur contribution afta I ,  but u must understand that you are relli giving @ poster STRONG HOLD to go ahead and RISK everythin LOVE, HAPPINESS, JOY, and all that marriage gives.

we all ve read many reply on this thread and the possibilities of not having SS child is very slim. Taking the Risk is bad and bringing a child that will CAUSE the parents forever each time crisis arised is not a gud tin. BRASh dont encouareg , just give ur opinon and let @ poster decide.

I just lost an uncle with this same Sydrome who reside in US, I have an extended family that has 4 children and they lost 3 and the remainin 1 is in Ukand yet an SS. though she is a nurse and she takes very gud care of herself  (she still ve crisis), due to this fact and her appearance she is still single and she is in her late 30s.

@ Targent, Brash jest saying things cos he has never xperience those pains and Crisis neva no how GOD has blessed him. You ve to admit wit me that until he c someone in that pain that he will understand wot this house is telling @ poster.

@poster, God will hepl you decide wot to do coz u cnt do it alone. Best of GOOD LUCK to u and ur gal, be Prayerful.

, Hmmmmmmmmmmmmmm I dont know if @ poster lady visit Nl, but i tell u she must be prayerful and wise cos if in the future (GOD forbid) anythin like this SS stuff start showing up she will be the 1 to be blamed. Men aint really get much shock when they can go out nd chase a young AA lady to get get they AA and healthy children, one of our family friends is a gud Xample of this; the old couples have 5 children struggled to nurtured them to adult when MR DEATH come knocking on their door, he was forced to take away 4 within a year and left wit only one, "seriouslly crying now" do u know wot, the useless man went out nd find himself a young gal give give him 2 gud & healthy children. now the first wife is realli lukin 90 years as a result of her loss. Now the so call LOVE they have has turn to HATTE. u c that. So my dear u know to sit down and think this over. This is not and neva a story, A True Life Thing, They reside @ Ejigbo .

B, E, C, A, R, E, F, U, L.

Ignorance in this aspect kills. Don't sit on the fence, be wise.

i was once in your shoes,we went out for 5yrs.I knew i was AS,he assumed he was AA until we started counselling for our wedding.I was shocked! Felt betrayed.I'm glad i made the right choice.It's a 25% chance per birth of producing a sickler.We broke up,it's been another 4yrs since then,he's happily married with a kid while i'm still trying to find love again.We are both happy.
My parents were both AS and they had 3 As,1 AA and our last an SS.We lost him at 10.We were happy for him.He lived a life filled with pains.My father is a doctor,he got the best od treatment.he spent the last 14mths of his life in UK.He died.that was the last time i saw my parents cry (they cried everytime before then).It was a tough thing.
please do not believe those who say their genotypes changed.Do not be fooled!
i have heard stories of couples who went ahead and had 2,3,4 healthy children,no sicklers.I know a couple that had 4 beautiful girls that are sicklers.It can be that bad!
do you know anyone that's a sickler?
my dear,i know now that love is not the only reason to get married.You can still be wonderful friends while you go marry non carriers.
please be wise.

Marry her.
This is because, if you should have two children
you have chances of getting: AA, AS
Three children: AA, AS, AS
Forget having another, because you will see wahala

Mr Brash: Longest time!

@poster
The possibility of having children with sickle cell is high,, if u are both ready to deal with the issues of having sickle cell children, then marry her, but if u are not , please wish her well and let her be, i know its hard,
but its better to face reality now, than for both of u to go through a life of misery which u know u could have prevented.

hello nairalanders,
@mr crackles,
which one be your own self.yoruba people say(this is a lay man's interpretation)"its fun to look at a mad man but its like a taboo to have one for a child".
please,please and please dont give the kind of advise you are giving here to a real life couple,they will curse you for life when the worse happens. Meanwhile i want you to try standing in the middle of 3RD MAINLAND BRIDGE and pray for your safety.ill

@others
from the spiritual point of view,we have been warned not to tempt God. its a different case if they are not aware.God has His reasons for revealing that to them now and not when the wedding invitation is out or few days to the marriage. Even Bimbo odukoya said,its better to have a broken engagement than to have a broken marriage. Our God is not a foolish God. Even JESUS resisted the devils temptation when he was told to jump off the cliff.so please all of you advising this person to jump off the cliff are not TRUE FRIENDS.

from the medical point of view


seeing ,they say is believing.i have been told that the pains of sickle cell crises is worse than labour pains,so you can imagine.
you will feel like crying for these children when they are having a crises,do you know that feeling of helplessness knowing there is nothing you can do.sometimes even the most potent analgesia(painkillers)do not work.
please we shouldnt for our selfish interest give birth to children that will curse us for life. REMEMBER ignorance is not an excuse.
now back to this couple.your first major mistake was and i hope others would learn from this.when you are going steady with someone there are some basic things to do HIV screening,genotype and some other test,the reason for doing this is to know and be fully prepared to deal with the consequences of your action.

sickle cell disease is not new especially among africans,i knew my genotype right from secondary school(AS),so i knew who not to consider.i had friends who were sicklers and i saw the pains they went through.
at this stage of awareness i dont see any reason why EVERYBODY should not walk into any hospital or lab to check their genotype.

i will give you different scenerios to butress my point.
[list]case 1 a woman in edo state(did my housejob there) came with her daughter(with SCD),during questioning she said she has 6 boys but was looking for a girl.the girl came quite alright but with what SCD.all the boys when screened turned out to be either AA or AS.So you see an example of tempting God.now almost every month they are in the hospital,the girl has osteoarthritis and cant walk.the woman is complaining of all her resource being drained.
[list] case 2 this is more recent.i have a patient that was desperate to have a child and get married before the end of last year. he just broke up with someone and met another "fantastic wife material".He brought her for me to check if she was medically ok.they've been together for about a year.anyways both are AS and i counselled both and told them of the implication and also advised that they should speak to someone that has that challenge,anyways they decided to go ahead.everything went smooth until she got pregnant,they became like cat and mouse and i really got tired of separating quarrels.she would soon put to birth but have left the house.tell me,if unfortunately they end up with a SCD child what will happen when the problems start.if the hot love they had for each other is already shaky now.only God knows.

there is a doctor couple i know of who had twin girls with SCD.don't ask me if they didn't know their genotype.

back to those photographs of T boz.i know from experience that a lot of sicklers do well when they travel out because a lot of factors that precipitate crises are absent such as mosquitoes/malaria,dehydration,stress, pollution and so on.so please dont compare those over there with those in our NINJA. please prevention is better than to cure. even if it is 10yrs,say your goodbyes and move on,instead of being sworn enemies when the stress starts.

alternatively,your madam can always go for screening abroad during pregnancy to determine the genotype and an option of abortion is offered.but what about the stress and the guilt.
i dont mean to be cynical but please lets do a reality check.until we find ourselves in certain positions we cant really say the extent we can react.
PLEASE GO TO ANOTHER LAB TO RECONFIRM OR A TEACHING HOSPITAL.

the chances of getting a SCD child is 25% for each pregnancy.thats too high a chance to take.and for all those chasing miracles,remember devil sef dey do miracles.
YOU SHOULD BE PRAYING TO USE YOUR MONEY TO BUY ASSETS NOT DONATING TO MEDICAL DIRECTORS TREASURY.ANYHOW SHA,WE GO CHOP

LOVE NO BLIND AT ALL, INFACT E GET TELESCOPE
PLAY SAFE
wish you the best
if you need more counselling,both of you send me mail (faithtrans2008@yahoo.com) or call 08055180507

Well said Doc.

guy, its no problem. its a matter of chances, u might av 4 kids dat r aa, 4 kids dat r ss, 2 kids dat r aa and/or 2 kids dat r ss and u can also av 4 as kids.
Moreso, the brîght side is dat u guys r resistant to malaria.