What’s Love Got To Do With It?

Gomez is lying on the floor, curled like a foetus. His head placed on Bisola’s lap as she kneads her palm into his temples. Someone else is squeezing his toes as he muffles sounds between clenched teeth that I can only make out to be something like, “Harder Harder”. He can barely move. I try to force him to drink something and it becomes apparent the agony that it is to swallow. We can hear the hurling through the gargle. I don’t say sorry or show any sign of pity because I know people like him have a disdain for such and frankly, my verbal compassion wouldn’t be of much help, so instead I put my self to good use and join in the kneading and massaging like the others.

He places my hands at the tail end of his spine; his skin is warm, hot even. I rest the weight of my whole body to my hands. I press hard as he instructs me, then I dig my fingers into his skin for a few minutes as though I am trying to forcefully ripen an avocado. He pulls his trousers down a few more inches and cajoles me to press even harder. He looks more frail than usual, in fact more skeletal. I fear I will crack a bone but he wants me to go harder. There are lumps that trail his spine, I know this is a bad one and his body is taking a thorough bashing.

Robbie walks into the room to see how he is doing. All three of us are still pressing and kneading tirelessly, we stop in intermissions to crack our fingers and stretch our arms hoping he doesn’t notice. Gomez muffles again, but at Robbie this time.

“My back, my back”, he says, it’s like a silent scream and I think we aren’t doing enough.

He is turned over to lie facing the ground and Robbie lunges with both knees on his spine. With a slight rustle in my voice, I tell Robbie to be careful. He laughs and reassures me not to be worried as it is all part of the practice.

Gomez yells again “Pray Pray”. Now the words become more coherent, it’s as though his jaw has been unlocked and the prayers make me teary eyed whilst I try to suspend them from trickling. It reminds me of a priest reading out one’s last rites before they become euthanized by the pain. I start to wonder whether he thinks every crisis may just be his last and somehow, I’m certain he does.

A few weeks later, the bout of pain is over, and I ask him to take me through the anguish. He tells me it comes in three stages. The first starts like a heavy weight crushing your entire body, so heavy that it seems like it cuts the air supply to your lungs and every part of your physical being, starving your bones of blood. Then it follows suit with the fever, a dry mouth and it appears as though a piece of shrapnel or a jagged blade has been lodged in your spine and someone keeps twisting and turning it around over and over again. Finally, you are paralysed by the pain but your body tastes every single splinter of it.

“What does the medication do” I ask “Morphine, Oxycontin, and Codeine, they just make you high but you still feel the pain” he says. “The meds are a sort of distraction”, he explains but your body just has to go through the war because you can’t escape. Still you hope the next one can give you some time to prepare even though you aren’t.

My friend Isioma is like Gomez too. She says her children aren’t allowed to see her when the pain starts. They wouldn’t understand she tells me. Unlike Gomez, she wouldn’t let anyone touch her. She likens the feeling to sawing ones bones till the pain sends you into a daze where you hang on the fringe of consciousness but the agony rages on. Ade had both her hips replaced and spent a few months at a geriatric ward. Sometimes she thinks her parents were a little cruel to do this to her. She knows that something is being done to her bones, but hers, she describes resembles grinding.

A few years ago during a routine blood test, I joined the statistics when I discovered I was one of the  25 million people carrying the gene that made my friends go through this sort of agony and Gomez, Isioma and Ade are just a few amongst the estimated 4 million Nigerians living with sickle cell disease.

Catch up on Wana’s other writings at www.guerillabasment.com and follow her on twitter @ misWanaWana

This is not fiction

Photo credit: //www.lifebeforedeath.com

 

 

 

58 Comments on What’s Love Got To Do With It?
  • dee September 27, 2011 at 12:38 pm

    hmmmm……well written!

    More insight on this topic –
    http://passionofawriter.wordpress.com/2007/08/05/aaasss-the-genotype-question/

  • cathy September 27, 2011 at 12:40 pm

    wow!!! so sickler s go through all that pain? omg!!!

  • Lue September 27, 2011 at 12:47 pm

    huh? not fiction?………i dont even know what to say
    http://lucianochinwe.blogspot.com/

  • AYO September 27, 2011 at 12:57 pm

    WHOA,THANKS WANA FOR TALKING ABOUT THIS.YEARS BACK,A FAMILY FRIEND WHO IS A CARRIER HAD A MILD CRISIS DURING HER VISIT AND THAT REALLY REVEALED WHAT THEY GO THROUGH.
    YAY,I GUESS I AM FIRST #MUSTPOSTINCAPS#

  • jay September 27, 2011 at 1:20 pm

    Dnt thnk I wud ever want my child 2 go thru this…..my advice 1nce u meet a guy u thnk u could have a future with u really shud ask b4 u fall in love….cos in my opinion its not worth it.

  • Emotional Babe September 27, 2011 at 1:29 pm

    It didn’t take me long before I figured out what the post was about. Because I have friends who have told me this story and people who go through this same thing.

    Honestly, what has love got to do with it? This is the question at hand. Boy meets girl, boy falls in love with girl, and girl is also head over heels. Both probably forget to get their blood checked before getting married, and the result is a child who is SS. Sickle Cell!

    Love started this whole mess now, didn’t it? What about in the case where the couple knew they have traits? As in they are both AS, AS? BUT still go ahead and marry each other, knowing fully well that the possibility of having a sickle cell child is great? Do we then say Love made them marry each other, or do we call them cruel for going ahead with the marriage and giving birth to a child who is going to continuously have “bouts and episode of pain”? Where’s love in that?

    I can’t even talk, because sometime ago, I also was in this position… Found out the love of my life was AS, and I didn’t know what my genotype was, so here came the scare, the reality I didn’t want to deal with. The fact that I might have to break up with the man I had fallen in love with if I also am AS. I even started thinking, I would just have to pray very hard if I am AS, so that God will make sure I don’t give birth to an SS child. Yes I knew I was being selfish. I didn’t want to loose my man. He didn’t want to loose me. We tried to talk about “what ifs” but couldn’t even swallow the thought, so the issue was dropped for sometime. What was apparent however was that I needed to get checked. We had to know, Longest relationship we’ve both been in, and we have been talking about our “future” since day one. More than 2 years in the relationship… and the issue came up.
    When we were getting to know each other, no one thought to say “Hey I like your smile, what’s your genotype”. I mean, no one remembered to ask that question. SO there we were, committed to each other, happy and all the works… only to face the possibility of a break up.

    Even though I didn’t want to talk about it, even though I felt like our relationship was banking on my being AA, I was slightly angry. Angry for whatever reason. I knew the truth though, even though I didn’t want to admit it.. If I turned out to be AS, the whole thing was next to being done. I have seen so many children suffering, I couldn’t do that to my unborn child. But, As a Christian, I still prayed through it. Anyway, I Did the test, and the result was good, thanks to God. Turned out I am AA.

    Why did I tell my story? Because Love has a lot to do with it. I was scared and didn’t want to take the test. I didn’t want to lose the love of my life. But when I thought about my unborn child, and the Love I hoped and prayed to have for my children, it made me go take the test. For a child I want to be able to say I Love, I had to take the test to find out my genotype.

    I can’t claim holier than thou and say bad about couples who get married despite the glaring fact that there is a possibility of having a sickle cell child. BUT A lot of people forget about the love you should have for your children (unborn Children) and they only think of the love they are having towards their spouse at the moment and go ahead with marriage.
    This is not fair to those children.
    I urge everyone to ask their spouse, bf, gf, etc the question of genotype. When you see how these people suffer, and yes I mean suffer, you will not want to have a child go through it.
    Get checked before marriage. Getting checked is not only for sexually transmitted diseases oo. It entails Genotype too, especially as Africans.

    • 9jamom September 27, 2011 at 3:50 pm

      Emotional Babe, you couldn’t have said it any better.

      Without being judgmental since everyone is ultimately responsible for their decisions, I have very strong feelings about people being blinded by claiming “Love conquers all”. Love has everything to do with it; as you say, the love of the unborn child. It takes a lot to watch someone suffer, and knowingly going into such a situation blindly is torturous for all involved.

      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. The facts and impact of the disease remain the same and will not change because of love. Although many alternatives such as adoption and Invitro with PGD exist, they aren’t without major emotional impact. For instance, Invitro with PGD is not fail proof – 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 IVF? (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 IVF that may lead to that decision, then what?

      On the issue of asking a partner about his genotype, it should be the first thing people are doing now. 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)…You might end up losing that love you sacrificed it all for because caring for a sick child takes a lot out of a relationship. 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. With knowledge comes great responsibility and that’s why everyone should get tested to find out their genotype and not just settle with what their parents told them.

      I became a part of that statistic two years ago when I found out 5months into my pregnancy that I didn’t have the trait like I had been told all along but instead had SC which is a form of Sickle Cell disease – yes, there is such a thing as the ‘C’ trait for those wondering if it’s a type. In addition, hubby’s previous tests turned out to be wrong and we found out he had the trait…

      You can read more of my story where you can learn more about Sickle Cell Disease and find more resources at http://9jamom.com/page/my-sickle-cell-disease-is-sc-and-not-ss

      • virgodiva October 8, 2011 at 8:35 am

        finally found someone who has a ‘c’ i aways have to defend me being AC just cos its not taught in bio class. remember my chem teacher even arguing with me till a doctor passed and said there is something like that

    • AJCiti September 30, 2011 at 6:18 pm

      Wow, powerful story I couldn’t stop reading until I got to the end hoping they would tell me what the condition was, sickle cell… Yes I’ve heard of this before and know people that carry the gene (or have it.. I’m not entirely sure). I know that having this condition is quite torturous and I would never want to bring that upon my children.

      It’s crazy that it’s never something I’ve thought about being tested for and asking a potential partner (genotype).

      Your comment really added to the depth of the story, thanks for sharing.

  • ItsMee September 27, 2011 at 1:51 pm

    Sickle Cell.. hmmmmm.. we will never know what they suffer. I pray they find a cure someday. Nice one Wana…

  • Lady G September 27, 2011 at 2:11 pm

    sorry gomez

  • eve September 27, 2011 at 2:16 pm

    couples should check their blood groupings before getting married. this might help, sickle cell disease is becoming common these days.

  • Natoday? September 27, 2011 at 2:23 pm

    nothing o. love has no strings to this kind of agony o.

  • Purpleicious Babe September 27, 2011 at 2:26 pm

    Deep stuff….

  • Dee Mist September 27, 2011 at 2:57 pm

    It is hard 2 live wit d pain.

  • Aibee September 27, 2011 at 3:06 pm

    Love should NEVER bring this kind of pain or agony. Sure boy loves girl but what about the children that will be born and who have to live with the consequences of their parents’ love for the rest of their lives?
    Sure, love conquers all. But wait let ALL be conquered before you jump the broom and bear children who may have to live in pain for the rest of their lives.
    Sure, if an AS marries an AS, each pregnancy has a a 50% chance of being SS, a 25% chance of being AA and a 25% risk of being SS. Those odds are however too high for me to stake having a child who may be ill for the better part of his life.

    Till science has a way of preventing parent to child transmission of the sickle cell gene, as science has been able to prevent mother to child transmission of HIV/AIDS, what’s love got to do with it? Nothing.

  • pynk September 27, 2011 at 3:12 pm

    hmm.

  • partyrider September 27, 2011 at 3:17 pm

    you cant imagine the pains sickle cell patients go through..i have 3 friends who are sickle cell patients..
    one is my neighbour..when you see them carry a 24year old boy,cos his limbs are too weak and painful to walk ,then you know this is a serious thing.i cant never forget when i witnessed his first crisis,his uncle had to put him on his back cos he couldnt walk,the last crisis he had was very bad..he was put on oxygen in the hospital,we feared he would die :(
    i know of another guy,when the pains start,his brothers take turns to sit on his back all through the night..the pain and restlessness is unbelievable..smh
    my neighbour for the two years he spent in the uk had crisis just twice,less frequent than in naija,why? mosquitoes! malaria parasite triggers their crisis..yes! sickle cell patients must always sleep in treated mosquitoes,with their doors and windows well netted..
    if you are a carrier,it is only good/safe and wise to marry an AA..to watch your child go through pains is the last thing you want,esp this kind of pain..
    there need to be more awareness about it in Nigeria..
    oh! and they hate pity and they hate been addressed as “sicklers”..sickle cell anemia/patient is more appropriate if you ever have to discuss it with them..

    • sett September 27, 2011 at 8:57 pm

      Wrong. Sickle Cell patients are actually less prone to malaria…please read some more .people with the AA genotype (normal hemoglobin) have a greater risk of dying from malaria

      http://www9.georgetown.edu/faculty/sandefur/handsonmath/downloads/pdf/scel-s.pdf

      • partyrider September 28, 2011 at 5:24 pm

        am not wrong,i probably didnt state my point clearly
        am glad you said “less prone” which means they can get it,but hardly..however once they do, its triggers their crisis..that is my point!
        and yes i agree with you,people with AA genotype are the “regular customers” of malaria.

  • Uhuh September 27, 2011 at 3:27 pm

    ummm did not get the first part of the essay….kinda freaked me out actually. #eeww

  • tinu September 27, 2011 at 3:30 pm

    hmm ave written a few articles on this disease and a close friend of mine who happens to be ss has just established an ngo for ss patients. personally ave had to break up wivmy bf of 3 yrs cos we disvovered we were both as n werent ready to take the risk.. its a hard decision but its for the best. ave seen people live in pain with this diseas n im absolutely sure i dnt want to put any of my kids tru that pain. only a wicked person wud intentionally do that. theres a lotta awareness going on now n i dont think luv has got anything to with this. some people have argued that miracles happen but on ma own ive said if God wanna do the miracle , he shud do it b4 we marry or even b4 i meet the guy. luv is not enuf to ease the pains a child goes during crisis and tho i have a lotta faith , i dont think i shud test God in that way. afterall thats y God gave us knowledge. if u see fire and jump into it, dont scream Jesus. Now that babies are tested b4 they r born, people claim u can flush out if its ss but im totally against abortion n even if the baby is just two weeks I TINUOLA, STILL CONSIDER IT ABORTION.

  • Oma September 27, 2011 at 3:58 pm

    Some people don’t believe the term” Love is never enough” but after i saw a friend go through an episode of Sickle cell crisis. I can say this Love is not enough for you to put your unborn Children through this pain oh. Love will not be enough to hold your family together when one partner decides that they can’t cope. homes have broken because of Children with Sickle cell.
    Prevention is Still the easiest and cheapest believe me.
    God grant all those who have to go through this pain the strength and comfort the need.
    http://lifethroughomaseyes.blogspot.com

  • Meeee September 27, 2011 at 4:00 pm

    I had a roomate in uni who had sickle cell disease and the 1 year we stayed together was “torture”.The unpredictability of painful crises was always present- one night we’d be gisting and laughing and a few hours later i’d wakeup to the sound of shouts and wailing from her.Every time she had a crises she’d always ask why her parents were so wicked to put her in such a situation.It was a difficult time and sickle cell disease isn’t child’s play!
    I have another friend who is AS and married an AS guy even though they knew their genotype before they started dating. She said she’d have amniocentesis done & terminate if she finds out the baby is SS. They’ve been lucky so far as their 1st child is AA .

  • miss peo September 27, 2011 at 4:32 pm

    this is a serious isssue o,lost my cousin and an aunt to this disease ,i’ve got a friend who’s AS and he says when he sees a cute lady before he wants to know her name what comes to his mind is her genotype which i find rather mean sha

  • faith September 27, 2011 at 4:41 pm

    I av a friend dat ȋ̊§ AS n her fiance ȋ̊§ AS too…av been tellin her not τ̅☺ go ahead with d marriage but she won’t listen…am sending her dis post ryt away… »̶-̶̶ †̥ånKz-► Bella naija…

  • the intricacies of life……. September 27, 2011 at 5:12 pm

    ive lost 3 family members to sickle cell, its a very challenging situation to be in, very painful for not just the sickler but entire family, i hope more awareness is raised especially to less educated pple in rural areas, so that it can be controlled.

  • missjay September 27, 2011 at 6:30 pm

    many people are oblivious to the SC blood group, its real and almost has similar traits to that of the sickle cell genotype, if mixed with AS, ur offsprings might come out as SS. please get tested, its one of the first things my boyfriend and i did before we got deep into a relationship, fortunately im AA.
    There is no amount of love u can have for a man or a woman to subject ur unborn children to a life of pain and uncertainty, unfortunately my boyfriend lost his brother to this ailment.

  • Tito September 27, 2011 at 7:39 pm

    I can’t believe how some people can be so narrow minded…i get very touchy when it come to this topic. You make it sound like it’s an abomination to be SS. i am a sickle cell warrior and i can say that i have not had a crisis in like 3/4years(thank God for that). i believe we are Gods special gift and with proper care i.e. enough rest, plenty water etc we can live healthy lives like every other person, and i thank God and my parents for bringing me into this world. I love my life, and do not consider it a burden.

    My opinion with the whole issue of AS not marrying AS/SS or what’s love got to do with it, is that I would marry whoever I felt was the right man for me, and if our genetics didn’t match up, then God, science, and modern medicine could help the rest of the way. Besides, the point of marriage is not to be a baby incubator, it is to share your life and love with someone else and have someone at your back who loves you and treats you well. Not everyone that gets married has children…and yet they still have very happy and fulfilling lives. We are living in a modern age, and the world is already overpopulated as it is. So choosing not to have children is not the end of the world.

    Not everything in life is guaranteed. Even people with AS or AA can get diagnosed with a condition that has the potential to be more complex than sickle cell. And yet they still get to find love. Diabetes, Cancer, Heart problems, Hepatitis…it’s a long list of medical issues that humans now face. Healthy people get viruses that kill within weeks–nothing is guaranteed! Anyone can have anything, so why is sickle cell the one that is the must shunned and feared?

    So many sickle cell patients end up alone and lonely, without someone to share their life with because we in the community are even stigmatizing ourselves out of fear. We live our lives in fear of passing sickle cell to our offspring. Instead of wallowing in myths and fear, do your research! You can love someone with sickle cell, and to relegate this man/woman to a life without his/her love just because of her genetic condition—-THAT is NONSENSE!

    • Dee September 27, 2011 at 11:37 pm

      God bless you! You just took everything I was feeling, but didn’t know how to express and put it into words. Thank you.

    • Moi September 28, 2011 at 8:17 pm

      @Tito: God bless u.. I understand that the topic of Sickle cell and love is a sensitive one, but one needs to look at it from all sides. I ave lived with Sickle Cell all my life, and not once ave I cursed or blamed my parents from bringing me into this world. My mum loved me and gave so much of herself, thanks to God and her, I am a “healthy sickler”.

      Now coming to the issue of love, I always knew I would only marry based on love and not genotype. Was dating an AA guy who eventually started misbehaving cos his mum didn’t want him marrying a sickler, as she once lost a child to the same condition, despite the fact that we could never ave sickler kids. Later on I met a nice young man, who I fell in love wit, he is AS and despite my genotype he wanted to marry mi, and today we r happily married. I ave a 4 year old AS child, yes we went for Pre Natal Diagnosis and I thank God my baby is AS. Now do I want more kids? Yes! But we are stopping at one as we don’t want to put any child at risk. If I marry AA n I never ave kids nko? Would I rather be in a loveless marriage just cos I want an AA guy? Never! Am not saying this would work for all, but u need to consider each situation very well.

      There are worse things than Sickle cell. We see young ppl having hepatitis, cancer, liver and kidney problems etc. Wat works for mi will not necessarily work for someone else but I am happy I made my choice, am loving life and loving my husband and child. You may want to seek counseling if u r in such a situation. With God, good food, plenty of rest and water and adequate medical attention, sickle cell can be properly managed.

      And yes AS marrying SS is a 50% chance of having SS not 75%

      • clairebaby October 17, 2011 at 7:58 pm

        my dear, pls don’t bring emotions into this and lets not decieve ourselves……an AS marrying an SS has a 75% chance of having an SS chinld and not a 50% chance…..u were just lucky…millions of others will not be…..also u went for pre-natal diagnosis..so what? do you know that it is possible to have an SS child in 6 consecutive pregnancies even if the risk is as low as 25%, will u keep aborting each time? imagine the trauma you’ll go through aborting 6 times when u really want a child… not to mention all the risks of abortion ie depression, infertility, marital issues etc. the truth also is that there isn’t one person in this world, u can pray and wait and find an AA man who will love you and with whom you can have healthy babies with….lets not be decieved, the truth is bitter, but it must be told!!!!!!!

    • Purpleicious Babe October 1, 2011 at 3:08 am

      Well.. I see ur point.

      I have SS friend too..she looks really good and healthy but its not the same for everyone…

  • Tiki September 27, 2011 at 8:09 pm

    Thank you for totally scaring me. i’m in the middle of this right now. smh

  • aw September 27, 2011 at 8:43 pm

    Born to a mother with sickle cell anemia, it hasn’t been easy on any of us. But God has seen us through. Everytime she has a crisis, that thought crosses your mind. It is really painful when I see my mum in such pain but I thank Baba God that she’s still alive and well. I am so grateful. I am AS, and I have been in love but within a week of meeting anyone, I ask for their blood group. I will NOT bring an SS child into this world. It is not fair on the child or on their family or friends. PLEASE DON’T DO IT! Through education and prevention, we can totally eradicate Sickle cell. Many thanks.

  • disturbedbythis. September 27, 2011 at 11:41 pm

    Thanks Wana for this nicely written article. I don’t think you’d have conveyed the emotions better. God bless. I don’t want to sound harsh but then, I can’t make light of this matter. It is not in any way easy to be a Sickle Cell Disease patient. Whether the genotype is SS or SC, it’s still Sickle Cell Disease and the outcomes are similar- significantly shortened life-spans, Painful crises, predisposition to infections with time as the different defense mechanisms of the body get weakened by repeated crises. And guess what? This is something we can decidedly wipe out.
    The Sickle Cell gene is a recessive one. What this implies is that once it exists with a normal gene, it doesn’t express its characteristics. So since there are ‘4 million people’ living with the disease and there are nearly 160 million of us, don’t we see we can do this? Please let’s get emotions a bit to the side and tackle this matter as the rational beings we are. Every AS/ AS union has a 1 in 4 chance of having an SS child. Guess what? This doesn’t translate to 1 out of 4 kids bearing the SS genotype. No one can tell how the permutations will work in any index case. And then if an SS marries an AS, the chances of having a child who has the SS genotype is a whooping 75%. On the flip-side if an SS marries an AA the chances of having an SS child is……….. 0%. We can do this! Yes, we can!
    This takes us back to the basics, health education! Know your genotype!!!! I have a cousin who had to cancel his wedding about 2 weeks to the date because he was tardy in doing a proper genotype check. He ‘thought’ he was AA. When he found out he was AS everyone was devastated but he knew he couldn’t continue. I am a doctor and it hurts me so much when the Sickle cell disease kids keep celebrating every birthday in the hospital. It hurts me more when a 4year old boy doesn’t flinch when you are setting an intra-venous line for him because the pain and apprehension of a needle prick is certainly milder than the pain from the crisis this boy has had to endure. Please check your genotype. We can render Nigeria Sickle Cell Disease free in few generations if we are committed to this. Thank you.

    • Tito September 28, 2011 at 7:52 am

      Please get your facts right…when SS marries AS, the chances of having a child with SS is 50% not 75%.

      • Bibi September 28, 2011 at 11:28 am

        Tito it’s 75%. She is right.

  • http://mynaijalifestyle.blogspot.com September 28, 2011 at 8:10 am

    Gosh!!!

  • Nomy September 28, 2011 at 10:13 am

    I will read an article on bellanaija any day anytime! Greta job! I only heard of the pain sicklers go through recently when i lost a sister to it! Thank you so much for explaining the extent! My sister (in church) was said to have been in serious pain and after some time fighting the pain and writhing in her father’s arms she just gave up! Very sad affair really.

  • Nifesimi September 28, 2011 at 10:29 am

    @ Tito, noone is making light of this issue, but every other person has had painful experiencies. I lost a friend last month she had sickle cell anemia and this was the only crises she’s had since she was a kid but she had one after so many years. I lost my father and my aunt too. So we are not making light of it we’re just looking for a way to stop the pain that comes with it.

  • ruzy September 28, 2011 at 10:49 am

    i feel rilli bad when i remeba that my TV director who had been every thing to me in making my TV Program some years back was suffering from this illness, he could not find a good job because of his state of health, i rilli liked him, when the crisis starts i always take him to the hospital, at times buy him the injections and watch him injects himself just to make him feel better. i cry at times but when i remeber that i cant change it, i give God the tanks because he alone knows better,.

  • HoneyDame September 28, 2011 at 1:52 pm

    Frankly, this issue cannot be over emphasized..wrote a short post concerning it a while ago….http://honeydame1.blogspot.com/2011/05/not-so-random.html

  • K! September 28, 2011 at 2:36 pm

    I have a cousin who is a Sickler. Most of the guys she dated (including the AA ones) kept breaking up with her because of her condition. As a result of that, whenever she met a guy, one of the first questions she asked was his genotype. There was this guy she had a crush on for a very long time. Eventually they started dating. The guy didn’t know his genotype and she kept pestering him to do a test. Finally, he did it and turned out to be AS. She wasn’t ready to let him go because they were really in love. She kept talking of how they’d get married and she’d either do a bone marrow transplant or not have children. Eventually, the guy had to break up with her because he wasn’t willing to go through the trauma of it all. It was one of the most painful moments of her life and she hasn’t fully recovered from it.
    Watching her writhe in pain during crisis can be so heartbreaking. It’s not something I’ll wish for even my enemy.

  • saphya September 29, 2011 at 12:34 pm

    glassy eyes, perpetual medication,plus protruding bellies,daddy always runnin away from home each time the kids are having attacks……. 5 out of 6 kids are SS,d boy amongst dem sumtimes suffer Purposeless, Painful , Prolonged, Penile erection. sickle cell is that bad.
    But sum carriers are lucky to live normal life if cared for appropiately. realy, dnt let luv push u into the risk of a life full of crisis,use ur brains,dnt let ur brain use u!

  • Favour October 7, 2011 at 3:41 pm

    It is an excrutiating pain no one can really explain trust me I am speaking from experience but with the help of God there are still many Sicklers who live happy, normal and sucessful lives hence I will strongly advise that for history not to repeat itself no matter the love that is involved having a genotype test before tying the knots is very essential especially when it comes to the topic under discussion ‘what has love got to do with it’ even if you feel you cannot call a relationship off even when you know that getting married to that person will bring about offsprings who will be sicklers and who will experience agonising pain for life but for the sake of the pain sicklers experience it will simply mean love if you call it quits. This issue should not be over emphasized.

  • jumi October 8, 2011 at 9:30 pm

    I will like to add that people with the sickle cell disease have more tendencies of getting malaria than anyone else, and this triggers their crises, therefore it has been adviced for them to take the anti-malaria drugs for prevention. The people with just traits i.e. the AS are the only people that have protection against malaria. Also the tendencies of AS and AS having SS is only 25 percent, so studies and science shows but i have heard couples who have 3 SS in jus a family of 5 or 6, I stand corrected though. In the country i live in, the healthcare dont even look in that way, it is kind of not taken into consideration unless you explain to them it to them. LETS TRY TO WIPE OUT THE SICKLE CELL DISEASE BY AVOIDING IT BECAUSE ABORTION A 12 WEEK OLD FOETUS WHO IS INFECTED ISNT A SOLUTION.

  • anittta October 10, 2011 at 12:32 pm

    Thank you for this!

  • Jatropha October 10, 2011 at 6:10 pm

    Do people still go through these things nowadays?By the last time I checked, sickle cell is completely avoidable.

  • Tcute October 15, 2011 at 1:31 am

    I was born with Sickle cell anaemia and for over 20yrs i had lived with the condition, my parents didnt know their genotype even though they were very educated. I have two younger brothers and they are both AS and AA respectively…so i am the only one with the condition. My parents tried everything….hospitals, drugs, white garment churches, candles, anointing oil etc but as you all know there was and is still no cure for the ailment. I could not live and play like any other child, i was shielded and protected from the world (My parents did not want family or friends knowing about the condition,lol). But i never lacked love and my parents never blamed each other, they supported and assissted each other and made sure i was comfortable and did not go through stressful situations. The final straw came when i had a major crises in 2003….i was 20yrs old and usually individuals with the disease dont live longer than 21yrs of age. I almost died but i thank God for His love ad seeing me through that crisis. With this in mind, i made up my mind that before the condition will kill me….i would kill it first,lol. I started declaring what God’s Word says about me….i developed an intimate relationship with God like never before, i knew God had a purpose for my life and i was not ready to leave the earth without accomplishing that purpose. This went on for several years until i summoned courage to take another genotype test in the year 2006…..i went with my Dad to our family doctor, all of a sudden my Dad was called into the doctor’s office and he came out weeping, i didnt understand what was going on and my Dad showed me the test results…..my genotype had changed from SS to AS!!!!!!!! At the moment…..i stay in the UK with its very harsh and cold weather, previously my parents were scared about my travelling abroad because of the cold, but now i have braced severe weather conditions, i have seen changes in my body, my tummy that used to be bloated is now flatter, my eyes that was usually yellow is so white now, my fingers and toes that were usually so pale are now pink…. I am 28 years old and enjoying everday life. I am telling my story to give hope to other sufferers…..there is life outside of Sickle Cell. I believe in Miracles and you can also get your miracle if you only believe…..it is a FIGHT OF FAITH!!!!!

    • Sbree October 28, 2011 at 4:49 pm

      Wonderful!please keep sharing this,it is very inspiring.

    • tbaby September 11, 2012 at 4:46 am

      thank u so much for sharing your testimony, i believe in miracles and i have recently seen God heal a loved one of this terrible disease.

  • clairebaby October 17, 2011 at 7:44 pm

    i’m a medical student and after seeing the terrible anguish sickle cell disease patients go through< i have decided that no parents should be soooo selfish as to knowingly bring such misery to their child. please 2 AS couples or AS & SS or SS & SS, should never marry! no matter how strong the "love" is…….

    • Gidi November 4, 2011 at 1:31 pm

      I agree wit hyou that no parent should be so harsh as to bring a child into the world with the possiblity of SS.Hoever, i don’t agree with the statement that such couples should not get married.They should but wombs should be tied and the choice of adoption chosen.tempting nature is not always faith,it is often foolishness and selfishness.

  • clairebaby October 17, 2011 at 7:48 pm

    PLUS have you ever seen a guy with PRIAPISM ie PERSISTENT PAINFUL ERECTION? damned painful i tell you…..just one of the pains these poor sicklers go through, it also leads to IMPOTENCE!!! NO LOVE IS WORTH THIS!!!!!! LETS ERADICATE SICLE CELL DISEASE NOW!!!!!!

  • didi October 23, 2011 at 12:18 pm

    My sister is a sickler so i understand very well the pain described above. sometimes i just wish i could take part of her pains away, and other times she becomes like a burden,. and i ask God why he would let her and my family go through this ordeal. She is a 25 year old lawyer now, smart and intelligent, and we pray weve seen the worse of it even though doctors and specialists say otherwise. Nice write up. I can totally relate.

  • sh-sh November 14, 2011 at 9:00 am

    i have never replied to any of these blogs but i just have to put my fingers to the keypads to reply to this….i am a sickler and my older brother is as well…trust me,i know what this is about..im 26 and still single…and the only reason is ..these genes..it seems like all nigerian men are AS..i would never ever think of subjecting my kids to these torture that i have known all my life. i think its a wicked thing to do.. my kids would hate me for it.i always tell people that even doctors that tells you everything about sickle cell cannot fully understand what it really means to go through those excrutiating pains..when you cant just help but asking God ‘why me? what on earth did i do wrong?’..i am single and i am so willing to wait till the AA superhero comes along. i love my future kids already.

  • mia February 7, 2013 at 12:20 pm

    my first two boyfriends were AS and i have always known that i was As since i was ten. i broke the relationships though very difficult to do. they were sweet people but when u think about the consequences, u just let them go. besides, i later realised they were meant for other ladies, so i just remember and cherish the memories of the times we spent together. we should learn to accept this scientific finding and move on. in the next ten years, we should not be seeing children with this condition again. plssssssssssssssssss.

  • Post a comment