Friday, September 2, 2011

Of Epiphanies and Sickle Cell

I’m ever thankful to God for leading me to the project I undertook for my thesis: Researching Sickle Cell Anaemia.  I am grateful to all of you who filled out my questionnaire. I got so much rich information. I learnt so much, so so much.
I have also been changed. It took me down memory lane, reminded me of people I had not wanted to remember.

First there was Chi-chi. Funny I can’t remember her surname right now. She was the daughter of my mom’s friend. I was 8 to her 18. I can't remember the details of her face but I do remember she was lanky and fair. Chi-chi was always full of life, laughing all the way and trying to engage precocious me. She was my grown up hero….except when she was sick. I never saw her ill but I heard the whispers ‘another crisis’, ‘bad’. Then one day I eavesdropped on a conversation between my sisters and heard them talk of Chichi’s illness and how it was a pity but she was likely to die at 21.
It was a blow to my heart. My puppy love shriveled in fear. I remember how I started watching Chi-chi. And started a mini countdown in my head...gone in 3 years.
I told my little heart to love her less, cause even then I understood that loving too much causes heartbreak. I also began to avoid her place. Thankfully, I can remember saying anything hurtful to her as children are wont to but in retrospective, I wonder if she noticed the stares, the pitying glances and people who avoided her cause her ‘life represented death’. How very awful lack of information is.
I don’t remember what happened to her cause the family moved away from Aba the next year.

Then there were Wunmi Ogundiran, Ekom Ukpong, Seun Oguntade. All three were classmates from secondary school, living with the cell. Ekom’s bunk was adjacent mine in JS1 and many a time I escorted her to the school clinic. I don’t know where they are now and I am trying hard to convince myself that Sickle Cell Anaemia has not claimed them.
I also remember Joke, a JS1 girl who died when I was in SS2 from a terrible crisis. We only had a small clinic in school, ill equipped to deal with a child who developed a severe crisis at 9pm in the night. She was buried there at school and that was my first funeral.

Fast forward to 2008,  during my banking days, I met a corper who carried herself ever so wonderfully and daintily. Bissy is 5’8, chubby and ever so chirpy. I did notice she was very careful not to exert herself(that’s where the dainty came from) but I thought she was just being ajebo or a lazy corper.
Nope! girl was managing her illness the only way she could, to avoid a crisis!
I remember one day in the pool car we were having a rousing argument about ‘how carriers who marry each other should be shot, diced and quartered’, ‘how people who have SCA must hate their lives and their parents’ etc etc. Bissy was quiet, listening and smiling. Then she goes ‘Ginger, I hope you know I am a sickler and contrary to your opinions I do love my mother very very much. I don’t like being sick but I love my life all the same’!
Bissy 100: Ginger 0.
I never forgot that lesson, and for once I didn’t have a comeback. I loved that girl even more.
It was like an epiphany:
Sickle cell does not always manifest physically. Yep. Not every slim, yellow cornea colored person has SCA.
Someone with sickle cell lives a normal life most of the time; cares about fashion, parties, boys, careers, etc etc
Someone with sickle cell can be whatever they want to be
Someone with sickle cell also wants a woman/man to love, marry and raise children with.
The course of illness varies in each person, Some mild, some severe.
With proper care and management, someone living with SCA will live as long as they were destined …. just like we all need to care for our bodies if we want to live long and healthy lives!

I never treated Bissy in any way different following her revelation but happily covered for her when she needed time off. But my best advice to her when she asked me if I thought banking was a good career for her from my experience was, ‘darling, you need to do an Usain Bolt here. You don’t need this stress :).
 
Fast forward to 2011 and I’ve discovered so many more wonderful people living with the cell. There is Tosyn Bucknor of These Genes and a blogger, most of you know Nutty J, another blogger. There is Toyin Adesola of ‘Touch a Cellwho was interviewed recently on Moments with Mo, Wande, a brave brave lady who is currently undertaking bone marrow transplant to rid her body of the troublesome sickle cells (you can read about her journey here) and Tosin Ola-Weissman of Sickle cell Warriors (don’t you just love the idea of brave warriors fighting sickle cell and hacking off its lethal curves with a sword?!). You should visit her page sometimes and read the interviews of interesting men and women who have the cell but have refused to be defined by it. There’s never a gloomy moment there!

So why am I writing this? First, this month of September is Sickle Cell Awareness month. Second, I was sitting here writing my thesis discussion and all these thoughts came flowing.
Twenty years ago maybe there wasn’t much hope for those with Sickle Cell cause of lack of appropriate medication, not enough counseling services, poor understanding of health personnel, racism etc. But as each new day comes, new discoveries are being made and hopefully one day in the near future, there will be a super pain reliever and smoother chelating system and crisis will be a thing of the past.

But while we wait, let’s make the world a more welcoming place for those living with it. I have heard statements like:
I am AA, but I can never marry a sickler
Yet I also hear, “Carriers who marry carriers are selfish
Then Carriers should not abort sickle cell pregnancies. Abortion is murder”!!
If carrier parents were foolish enough to get married then they had better be prepared to give birth to the child and raise it”
Finally you go on to say this about the child born with sickle cell “They hate their parents and wish they had never been born”.  So  many contradictions! Much as we preach prevention and say do not abort sickle cell pregnancies,  we must be more positive about Sickle Cell!

I notice this strong theme of blame for carriers of Sickle cell gene. I was on that camp before, but I have seen the light now. If that is where they have found love why judge? There are options available to assist reproduction like adoption, prenatal diagnosis/selective termination, adoption, IVF using sickle free eggs and sperms, surrogacy innit?
Moreover, Love is hard enough for single ladies and guys out there (sorry I have to use the cliché). Let’s try and celebrate those who have found happiness in each other and wish them well or what do you think?

50 comments:

  1. Ishhh... this topic makes me sooo "freagin" MAD... I am AS least the last time I checked, the time before that I was told I was AA. I don't even care what I am , I will marry whoever I want with no limitations whatsoever.
    I am not going to say "destiny is this or that" or give an excuse for who I fall in love with, and my parents better not even dream about restricting me in anyway. I know people who are SS, very great men and woman, so freaking awseome/amazing with enough love to change the world and when I hear people say " No one should ever marry a carrier" it just makes me want to break something. Marriage and love isn't solely for the purpose of pro-creation, there is always adoption.

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  2. Its always confused and irritated me that people can get so up in arms about carriers marrying other carriers. I know that as a carrier, i have the chance of having a child or children with SCA if i marry another carrier and that the situation shouldn't be entered into lightly but to condemn an entire (and rather large) group of people because YOU think they are doing something wrong...not cool.

    As a carrier, i know that i would not take the risk of having children with a sickler if i were to marry one. I also wouldn't have a million kids with another carrier. Why tempt fate, right. Besides anything can happen. Both my parents were AA and i came out AS.

    Good luck with your thesis Ginger. The survey was very thought provoking and im glad to have taken part in it :)

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  3. I didn't realize this disease was still so prevalent. Heartbreaking...

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  4. @ladyngo: it's not medically or genetically possible for both ur parents to be AA and you be AS. There's some misinformation going on there.

    This topic is a very sensitive one for me. I lost a cousin in 2007 and till today I have not been able to delete her number from my phone. One of my best friends is living with the disease and I pray for him everyday. I honestly believe that only people who have never witnessed a crisis or see how it can affect someone will take d chance of having a child with SSD.

    A very close friend who is a carrier is engaged to someone else who is a carrier. They are both willing to take that chance. I've offered my advice and now we hope for the best because there is always the chance that they won't have a child with SSD.

    At the end of the day, na God get power.

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  5. Lost a sister in '93 due to the genes. Sad bit is she shared her birthday with the parents wedding anniversary... One can only hope that those who have the disease remain strong enough to soldier on.. sigh

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  6. @9JaFoodie - No vex dear. It is the loss of the person discriminating. I pray that you will meet the one who will love you truly madly deeply.

    @LadyNgo - You got it Lady. That was what inspired the post: the wholesale blame. Education helped me, so i am passing the love on :)

    @Jayne - Hey Ma'm. Yes it is heartbreaking that something a trait supposed to protect from malaria is now causing more harm.

    @Thanks Sting. I thought so too. the misinformation.
    We have all been touched by sickle cell..but it doesn't mean we should negate the life or choices of those alive.

    @Rustgeek - so sad to hear that. The coincidence with the parent's wedding anniversary goes to show that she was a child that was longed for.

    If only Scientist spent more time on researching cures instead of more efficient diagnostic tests.

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  7. I don't understand what u mean....I was sharing my thots and opinion. I don't get how what I said negates d life and choices of those alive. That is a confusing response to what I wrote but I'll leave it alone.

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  8. We read about SSA in school, my small town seemed so far away from the rest of the world.The only thing I remember is that it's painful and debilitating, and it was amazing to me that the body was able to determine that malaria wasn't able to live in cells shaped like that so it adapted. One of my teachers always said "good news, bad news, who's to know?" That's how I feel about the very early history of SSA, it was the adaptation that saved lives, now it's not necessary with all the vaccines, I just wish the body could turn back the clock and fix itself.

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  9. Ya, I was thinking the same thing: it's so hard to find love. How do you ask your lover to get tested for the gene, and then what if they've got the gene. It's a toughie. And I always say, "It's so easy to judge."
    Great. Awesome. Inspiring. And revelatory post Ginger!

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  10. Great post honey. This topic is a very sensitive one for me because it is hard to find love in the first place and then you are told that both of you are carriers and cant marry each other. I think couples should look into the alternative ways of having children like the ones you mentioned above. Some people are lucky to be free of the trait while others aint. Why judge them harshly like what is happening today? Gings, a lot of people are single and sad today because of this issue and i am so glad you boldly talked about it.
    Like Madame Sting said, at the end of the day, Na God get power.
    Hugssss.

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  11. @Dear Sting - My apologies at my ambiguous response :). I was being reflexive that you are supportive of your friends in spite of your personal experience, yet many think that their personal experience gives them the right to negate others choices.

    Madge - I love you Madge! If evolution had waited just a little bit, here we are with insecticides, mosquito nets and chloroquine. We don't need its help anymore.

    @Sandra - Thanks and I've missed you!!
    Indeed it is a toughie that has caused many engagements to be broken. My sister's friend got dumped two days before her wedding cause the groom found out they were both carriers??!!
    Yes, there are implications for the kids' health but societal judging just makes things worse.

    LilyJ - Hey. hope the exams are going well. That's the thing...with the 1 in 4 occurrence of SC trait in Nigeria, meeting a carrier is not rocket science. The couple and 'concerned' family just need to educate themselves on their options.

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  12. Very nice and inspiring. As for me, I do not stand for carriers marrying each other, and its my opinion. Life is full of choices and we all have to make ours. The good thing is that we know the possible consequences of the AS-AS choice.

    @ Lady NGO, one or all of the three of you needs to check again

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  13. @ilola - That's a strong stand. So what is their choice? If you had a daughter/sister/friend who is AS, will you tell her AA partner or no marriage for you? Cos those are her choices and that's not much of a choice to me....

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  14. Hmmmmm......am kind of reluctant to comment, even deleted the first one because of the 'tone' of your reply to sting & @ilola, but.............*sighs*...ok.......

    Don't know if you read a post of mine titled RIGHTEOUS ANGER last month?...well, it explains my stand on it...i am AS, married an AA, but my aunty who is a blood relation of my mum was SS died when she was 27, when i was 18 then...i was a witness to her several crisis & i pray & wish nobody should undergo what she did.

    Yes, i am among the school of thoughts that believe it is the act of wickedness and selfishness for both carriers who are AWARE of their genotype to still go ahead to marry! Churches even ask for it, because they know the STRESS it has on couples, both EMOTIONAL & FINANCIALLY.

    I recently read a post in DELASCOPE'S of a couple that has 5 SS children they didn't know until after 2 died.....please sister, we should create an AWARENESS..if one does not know, like our forefathers & parents were, then that is a different thing, than for one to see fire & still go ahead and put one's finger into it believing in LOVE & FAITH... the bible says; DO NOT TEMPT YOUR LORD THY GOD!

    PLEASE, IT SHOULD BE ELIMINATED RATHER THAN ENCOURAGED.

    my 2kobo..thank you.

    p.s,,please, i thought the essence of your research was to create an AWARENESS? Am kind of confused here..seriously.

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  15. Hey Ibhade, thank you so much for your 2 kobo :). I only accept $$$ na.
    I am not saying your opinion is invalid. Nor Sting's which I thought I explained. Nor @ilola's. Our opinions are shaped by so many factors.
    But I am hoping that awareness should include reasoning together. Prevention of new births of children sickle cell is important but we have to think of the burdens created all round for people who have the trait.
    Saying AS must marry AA ONLY creates a burden which is why options like prenatal diagnosis, IVF adoption have been created to assist reproduction even if not acceptable to everyone.
    I am increasing awareness about options and I am saying AS/AS marriage aren't as doomed as we formally thought.

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  16. hiiyyaaa....wanted to say hi while i was here to follow your blog :)
    I will come back to read, got some things to finish at home front...xoxo

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  17. I have friends who have SCA and they are really doing fine. The problem I have is that when people start putting moral judgments on illnesses, it's not a good thing. It's a lot more important to me to try and find answers, treatments and cures than to place blame.

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  18. When I was in primary school, I saw two kids die from Sickle cell
    In secondary school, I returned from summer holiday to discover that one of my good friends had died from sickle cell. Before I left secondary school, I saw two more people die from this disease.
    After leaving secondary school, I have seen more people die.
    I say this without meaning to be harsh: It takes a selfish person to knowingly bring an SS child into this world.
    I apologise if I offend anyone but if you have seen a Sickler child in pain - you will know what I mean.
    Love is no excuse

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  19. ok o...my 2 EURO comment then. accepted?..:D

    I am glad to hear there is a solution towards it..but how many people have access to it & can afford it?

    PREVENTION IS BETTER THAN CURE is a common saying...so why not AVOID it?

    I am not saying people with SS don't have great, wonderful & better lives than me that is AS, but i am talking about the PAIN! I mean, you just got to see them CRYING & MOANING that you pray it should END!

    There is no JUSTIFICATION to WILLINGLY bring in a human being into this world to SUFFER SUCH PAIN all in the name of love.. BELIEVE ME, IT WAS SO PAINFUL.. watching my aunty's mother weep bitterly at the loss of her daughter, is what every mother prays not to experience in her lifetime: TO KNOW HER CHILD'S GRAVE.

    Tnx..my 2 pounds ehn?..hehehhehe

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  20. Nice post. I cannot phantom the reason why people living with sickle cell should be treated like outcasts, its totally not fair! I remember watching a program while i was in Nigeria, and this man said something about sufferers being witches and all. Ignorant cows.

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  21. GINGER!! I feel like you just put a shovel in my heart and dug up buried emotions. I lost my dad to sickle cell and it hurt seeing him in pain in his last years... I don't know... Let everyone act out their faith. My aunt had had her first or second child before she realised she and her husband were both AS. He had always thought he was AA. She has 4 children now and none of them is a sickler. Same for my friend whose parents are both AS. 4 children as well and none is SS. It's not right to test God because of examples like this and I totally understand those who think it's selfish to bring a child to this world to suffer but I feel our generation has several options now and finding out that you and your partner are both AS shouldn't necessarily lead to a break up... but watching one's child or anyone in that kind of pain is heartbreaking... I don't know...

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  22. Welcome and thanks Chintan :)
    @Mom - I think so too Mom. Instead of ever more increasing discriminating tests, if focus can be placed on cure or making the world a better place that would be best.

    @NIL - I agree that deliberately birthing a sick child into a world which has no easily accessible cure isnt on.

    @Ibhade - I gave you pounds you say you want Euros? na your loss oo. That was a vivid picture you painted there. Really sad...

    @Ope - My sister, its ignorance. Just like some say Albinism is witchcraft! smh

    @Mstizzle - Sweetie m, I didn't mean to make you sad. Hugs. May his gentle soul rest in peace. Those were beautiful stories you just told. I thank God for your Aunties. Its good to hear that not everyone is unfortunate.

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  23. Maybe i need to go and read me more the SCA before posting a comment. But then again I just need to ask these questions:
    How did we as humans come about the Sickle cell?
    Is the union of AS + AS the only way to get SCA? or there are other ways?
    Is there an increase or decrease in the number of people with SCA giving that people are not allowed to marry carriers if they are carriers too?
    In my opinion, I don't think people should be stigmatized because of the shape of their blood cells.

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  24. Okeoghene, you asked excellent questions. Thank you!
    The sickle cell originally evolved to protect people who lived in malaria infested areas of the world (Central and West Africa, Saudi Arabi, Southeast Asia, Greece) from malaria. back then malaria was even more dangerous than now. But in recent times, with better nutrition, malaria prophylaxis and a population explosion, it is no longer as useful......
    like Madge commented above 'we just wish the body could turn back the clock and fix itself'.

    Only the AS/AS union and AS/SS union can possibly produce children with SCA - 25% and 50% chance respectively.

    Your last question is very interesting. Studies so far have proven that societal/church/govt ordained mandatory screening/censure have not had as much effect on preventing SCA births as Couples being aware of the options they have and using them. We are dealing with human beings not robots who will follow their hearts but when given support and options they'll make better choices.

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  25. I've always felt that every human being should play their part to eradicate illness and human suffering where there are pretty good chances of eradication. That does not mean killing or oppressing human beings who suffer from the illness but aiming our best efforts at prevention. There is no point in walking into a relationship with one's eyes wide open, knowing of such complications and praying for smooth sailing. To me, that is foolhardy.

    There are cases where people do not genuinely know of the complications of sickle cell and in such cases, what cannot be helped must be endured. But where it can be helped...there is no excuse. God gave us the knowledge to be able to make informed choices, he has given us the tools to help ourselves so that we and our children do not and should not suffer unnecessarily. So there is no reason in this day and age why anyone should walk willingly into an SCA scenario. My two kobo.

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  26. Wow! What can I say? Well I'm not surprised by the sort of reaction that has been generated here judging by the fact that Sickle cell is an emotive subject. People will always have a strong opinion about the issue.

    However, in my view I think what we need is more awareness and education about the causes, prevention and management of the disease. When people are well informed they are in a position to make informed choices. This needs to start at an early age and schools are the best place to do this.

    When people aren't well informed about sickle cell or any other public health issue for that matter then their views will be formed by culture and beliefs that are not necessarily in tandem with the reality of scientific evidence. You really can't blame them, can you?

    My wife is AS, I'm AA, we both have two children. One is AS and the other is AA but all I can do is to ensure that I inform them about what I know aboout SCA and hope they make informed choices.

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  27. Ginger, I think you got me wrong o. I am not carriers should not marry, I am AA and I can marry AS. What I was meant is that I think we should be ready to face the consequences of our having SS kids, if AS marries AS

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  28. Everyone has a right to fall in love/marry who they please regardless of genotype. Provided the couple make informed choices when it comes to having children. Remember, there is still a thing called ADOPTION.

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  29. As a medical student,I stamp my foot on the ground,raise my right hand and say a big NO to carriers marrying and i owe no one any apology. ahhh,yes some of them are amazing,wonderful,cool,hot,normal,bla bla bla, do you know how much they spent? bone marrow transplant, sickle cell free sperm, c'monn which man would be proud of that nah? if I have a child or friend that is a carrier and I say no partnership with another carrier and you come with that the choice is mine story,abeg when your choice plays out don't come to me,don't even tell me to pray for you,to be fore warned is to be fore armed.
    my 1,000,000 dollars joh :D

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  30. Thanks for raising awareness girl :) ..i dnt know much about sickle cell, but i do know people shld check their genotype before marrying and getting babies..

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  31. Brilliantly written Ginger.
    My friend and sis friend died of this. My friend died after Secondary school and my sis friend died after a few years in marriage. But I won't castigate anyone those with that ailment cos I believe God heals- I've heard stories of sickle cell being healed.
    On the contrary I empathise with people living with it and also people who have experienced Fathers/sons/etc who have die with it....sad though

    Btw, Ginger your bold dear and be ready for constructive criticisms in this field ok! Brilliantly written Ginger.
    My friend and sis friend died of this. My friend died after Secondary school and my sis friend died after a few years in marriage. But I won't castigate anyone those with that ailment cos I believe God heals- I've heard stories of sickle cell being healed.
    On the contrary I empathise with people living with it and also people who have experienced Fathers/sons/etc who have die with it....sad though

    Btw, Ginger your bold dear and be ready for constructive criticisms in this field ok!

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  32. Thanks babe. I'm AS and i don tire to dey look for AA guys 'cos i've never met any. I've resigned myself to the fact that i will be having some very expensive babies. Chikena. All these self righteous anger pple taking a stand really do not know how badly the shoes pinch. Should I give up on love and marriage becos i cant seem to find a guy who is AA? Is it my fault that i'm a carrier? Thank u o jare. Like you rightly said, the awareness is not only to higlight the disease but to also highlight the fact that AS X AS marriages is not a death sentence. Gbam

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  33. my man is a carrier, and he thought i'd bolt when he told me, but luckily, i remembered the genetics behind it all, and am just not one to bolt about things like that.
    on the flipside, it's not just education, it is a willingness to be open-minded. i've gotten into this debate with African medical professionals who have all the education and information in the world, but still would say that they wouldn't marry a carrier and that two carriers having children is 'evil, selfish, inconsiderate'. let us please not presume that education=awareness or acceptance of facts.
    Great post, ginger!

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  34. @Ginger, great post....thank God for the wonderful options available to people today.
    @Yetunde...You seem to be missing the point. You can marry AS cos ur As urself but please get educated on the options of bringing a child into this world. Do not assume God will do it and go into marriage with another AS.
    God help us all

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  35. the single most informative "comments thread" i have ever read in my entire life. its like coming out of a science lecture (that made sense)! Great work using your blog to highlight this issue, and good luck.

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  36. @toinlicious... i do get the point. maybe you don't get my point. If i find love in the arms of an AS man, i will resign myself to IVF. As long as my husband is cool with it and is willing to go the whole hog with me then i am very willing to go the IVF route. That the point i'm making.

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  37. wow Ginger. brave of you to write on this touchy topic. I actually agree with your view on it. Personally, I have relatives who are carriers and who also have the disease but they're living very well. I don't know this as a fact but the way it seems, there are more AS people than AA. Does it mean the AS shouldn't marry? I'll just leave it at that. Good thing is there are so many options available now and better ways of treating/managing the situation.

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  38. and one more thing. I never knew the disease is originally artificial i.e for malaria prevention like you mentioned earlier in one of the comments. please correct me if im wrong

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  39. Great discussion, and a touching preamble from you Ginger. Almost got me crying.

    There are better ways to manage SCA nowadays but I still think education and awareness is lacking in many areas. I hope your thesis is going well?

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  40. @Yetunde...ai, cool. guess i read u wrong. All d best

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  41. very insightful - thanks for sharing and educating us, we all have a role to play

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  42. This is a great write-up Ginger. I personally think it is irresponsible of people who are AS to marry each other; i just feel for the stress and sickness that the potentially SS child might go through. But still, it's not something to get all worked up over cause in love, you never know, do you?

    Good luck with your thesis. It was my pleasure to be part of your survey

    Adiya
    Muse Origins Features
    Muse Origins

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  43. Great entry, Ginger! Honestly the personal stories were so touching, that and learning of bloggers who are dealing with SCA. The comments remind me of the ones I got after my March 2010 post and I do understand where people are coming from. But I don't think this is a case where AS marrying AS has to be banned or condemned because not every AS/AS union will lead to SS and also because of the emerging technologies available in parts of the world. Imagine a day where this disease can be reversed in the womb? Imagine a day when there's a cure?

    Gosh I need to do more!

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  44. Glad to be a part of that survey.

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  45. Great Post Ginger... Very lovely write up

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  46. Great write-up Ginger!

    While I think it’s very easy to say *you* don’t care about what you are and you’ll marry whomever you wish, before doing so, I’d advise anyone with that opinion to talk to several people with Sickle Cell some more and be around them while they *are* in pain. Deciding not to marry another carrier isn’t condemning an entire group of people or negating their lives –as someone who has Sickle Cell Disease, I am not offended in any way by people discriminating on that. With knowledge comes responsibility.

    The facts and impact of the disease remain the same and will not change because of love. Although many alternatives exist, they aren’t without major emotional impact. For instance, Invitro with PGD is not failproof – at the end of the day, it’s still science and doctors can make mistakes selecting the embryo. That is why they still strongly recommend further testing to verify the baby’s genotype after conception. It also isn’t a cheap option can easily cost 20-30K USD depending on whether you choose a single implantation or multiple (which might make more sense considering the risk of errors/miscarriages etc)…

    Another thing to consider is how many 9ja men are keen on adoption or invitro? (not an excuse but part of the realities)

    If you don't believe in abortion, IMHO, don't go into an AS-AS partnership because there are unplanned pregnancies and errors during Invitro that may lead to that decision, then what?


    @LadyNGo – it’s impossible for both of your parents to be AA…

    @Sandra, it’s not as difficult as you might think to ask; if he’s serious, he’d do it but you might need to first explain and make sure he fully understands the consequences of not doing it. If he's not getting it, you should be worried about how such a person would fare if you do end up having a child with Sickle Cell (much bigger issue)...Before you become serious and there’s a sense of “if things worked out, I would marry this person”, ask them to get tested. The name of the test is ‘Hemoglobin electrophoresis’ … It takes love to make the hard decision – when I asked my hubby to get tested when we were dating, my stance was straightforward, we would break up if he had the trait (I had seen/heard too many to risk bringing a child into the world to suffer), little did I know that I would find out much later that his tests were incorrect, and my thinking that I had the trait alone was erroneous … why it's important for all to find out their genotype and get at least one second opinion...

    You can read more of my story at http://9jamom.com/page/my-sickle-cell-disease-is-sc-and-not-ss

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  47. So i liked this post.
    BUT........ lemme tell you a story.

    I have an aunt who is a carrier, she dated this man who is also a carrier, had two beautiful daughters for him, my beautiful cousins.
    For as long as i can remember they practically lived in LUTH, because both girls are SS. One day the man came home and locked them out, he said he had had enough and couldn't do it anymore.

    The first time i witnessed one of them in crisis, my heart was bleeding because there she was, this frail little child in pain, crying non-stop, unable to sleep, when this could have been prevented?
    I think of the activities they might have to miss out on because they always have to be careful not to trigger a crisis. I think of the shitty healthcare system we have in Nigeria, so so much these girls are going to go through, when their parents who are now not even together because of this illness could have avoided this.

    I also used to think that 21 was the "time-up" for patients with SCA but since i've left Nigeria i've met a number of older people who are living with SCA and doing quite well.

    Like you said it's tough out there finding love at all but i won't be one to support 2 carriers procreating knowing full well the consequences.
    So yea, love and what not but it might be a good idea to explore other options such as adoption.

    Just my opinion.

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  48. I am a AS and one of the first and only things my mum told me concerning marriage was please dont marry another AS. After several trips to the hospital and seeing sickle cell patients, it no longer became a thinkable option. To avoid all this i have met the right person; i must stick with you feeling, once i feel that a friendship might progress beyond casualness i ask abeg what's your genotype? If you see a sickle cell child cry in pain you will realize that it was better for your heart to have been broken once than having it break over and over again throughout a life time. I know HE is an Almighty God and there is nothing HE cant do but will you knowingly enter a hungry Lion's cage because H|E has promised to keep you safe from harm. Please if you must marry a fellow carrier opt for adoption.

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