Sickle Cell Awareness Month

I just learned today that September is Sickle Cell Awareness Month, and I’m glad there is a time to focus on this disease and the work being done to eradicate it. I encourage you to read up on sickle cell anemia/sickle cell disease if you know nothing about it; a quick search on google will reveal a lot of sources of information. I also encourage you to donate to a local organization if you have the means. Any amount is helpful, and if you spend a couple of dollars on coffee, a new nail polish, or lunch out every day or every week, it’s easy to justify making a contribution. I know money is tight so I’m only asking those who know in their hearts they can spare $10, $30 or more. Like last year I chose The Sickle Cell Association of Ontario.

The only time I’ve written about sickle cell anemia was when I connected it to a question I was increasingly being asked while trying to meet a Good Naija Man. These potential husbands would ask me: “What’s your genotype?“, a strange question unless you were born and raised in Nigeria. At the time of that entry (March 2010) I did not know my genotype, though I knew my mom was AS. My view was that if it turned out I was AS, I would not let that stop me from marrying another AS and I received quite a few comments from people who disagreed with my view. It’s an emotionally charged topic: those who have had direct contact with people who are suffering with sickle cell anemia cannot understand how someone carrying the trait (genotype AS) would knowingly marry and risk getting pregnant with someone who has the same genotype.

I have not known anyone who has suffered from sickle cell disease, and the reading I have done on the treatment of the disease in North America has been encouraging, though I know that not everyone in the world has access to the available treatments. I now feel that if I was AS and was marrying another AS, we would have to meet with a genetic counselor to examine our options very carefully. I am not comfortable with some of the options out there, such as terminating a pregnancy that reveals the child has sickle cell anemia, but I know that a genetic counselor would give us a lot of food for thought. Also, when it comes to calculating the odds, one cannot forget the God factor either, and the whole experience would definitely be faith-testing.

I wrote an update on my original entry saying that I was AA, and I got tested again this year to make sure the first test was accurate. I encouraged my sister to take the test and she is AS. When she asked a few questions about what it means to be AS, her doctor referred her to a geneticist and she has received more information than she cared to know, including ethnic backgrounds she should think twice about getting involved with due to a thalassemia that is present among that race (I think it’s beta thalassemia, but I could be wrong…I hope the doctors among us will correct me!). I find the genetics side of things so interesting.

All of this to say that I applaud those who have the disease and are fighting it and keeping strong in the face of all it entails. I pray that we will see a cure in our lifetimes.

Updated to add: This entry by Ginger on Sickle Cell Anemia is a must read!

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13 thoughts on “Sickle Cell Awareness Month

  1. I am AS, and married an AA, becox i don’t have the heart, resources and faith to marry an AS. I witnessed first hand the sufferings of a loved one and would not wish it on anybody. I don’t want to subject a human being to PAINS through out their lives, because of my love or faith, and i am glad to know there is an awareness to eradicate the problem and a discovering of new treatments, but that does not mean, one should get ‘burnt’ because it can be treated when it can be avoided, to me, PREVENTION IS BETTER THAN CURE, AND TO BE FOREWARNED IS TO BE FOREARMED.

    • Hello ma, thank you for stopping by!

      I completely agree that prevention is better than the cure, but this topic is so multi-faceted. AS and AS can marry and have AA and AS children, and those odds are higher than the odds of having SS, so I find it hard to endorse a complete ban on AS/AS unions (not that you have suggested such a thing). I still don't know what I would do if I was AS and I had finally found a guy who was AS to love, but I know for sure we'd be doing genetic counselling. I feel you when you said you didn't have enough faith to marry an AS. I definitely don't have enough faith at this time to believe that I wouldn't have an SS.

      Did you know your husband's genotype before you decided to date him or did you find that out along the way?

  2. I have a cousin who is a sickler, she is married to an AA guy and the have two very active kids.
    When she goes into crisis mode… it bad and I really mean horrible.
    I think it will be very unfair on the children of AS parents who are sicklers.
    sometimes, love is not enough other factors ought to be considered too.
    Having said that, I know couples who are AS and have children who aren’t sicklers.
    how have you been?

    • Your cousin finding love warms my heart…I'm glad that if she was ever affected by the stigma of being SS, God has blessed her with a husband and children.

      You bring up so much that we can only toss around because it comes down to who gets to make a call on what we can or can't do. I'd like to believe it's God but you know how it is.

      I'm fine oh!

  3. I have the trait and need to be careful about who I have babies with. But, since I have no desire to give birth, that should not be a problem. However, it may happen so I need to be careful. Living with the trait means nothing really. It is the people who are born with it that have the huge life altering issues.

    • Hehehe…are you changing your mind on the baby thing, ma'am?

      (Just kidding. Kind of.)

      My sister was told that if she gets into a really strenuous sport like high altitude extreme running she'd have to be careful but you're absolutely right that you live a very normal life as an AS.

  4. GNG, the topic is indeed a charged one. I just wrote an article about it last week that raised a bit of a furore. But I am not backing down in believing that AS can marry AS as long as they know what they are in for. As long as they are making informed choices. Not every one wants prenatal diagnosis and selecting pregnancies but for some it is a welcome solution than not marrying the man they love.
    Anyway, I pray God helps us to find our own.

    Amen to your prayer about a future cure.

    • Thanks for the link and what a wonderful and comprehensive look at the sick cell it is! Honestly, kudos to you.

      I'm with you on being uncomfortable with selecting only non-SS babies to carry full term…then I hear how horrible it is to deal with the disease…clearly we need a cure and we need it NOW!

      Amen: God will help us find our own and by his grace we won't have to deal with sickle cell anemia.

  5. Sickle Cell is a very serious disease. sigh. Amen to those fighting for yourselves and lover-ones!

    Kudos GNG for this one. I had no idea there was a month dedicated to the disease.

  6. Prevention is way better than cure. I do not blame our parents for their ignorance back in those days. but anyone who knowingly brings into this world a child to suffer for me is stupid and heartless. I have a cousin who is SS and I have seen the pains, the agony she goes through. I see the fear and pain in my aunts eyes any time my cousin has her crisis.

    It is not a pretty sight and I do not wish such pain even on an enemy

  7. i have the sickle cell trait – so i can not mate with a male who has the trait or else our offspring will have the full blown disease. my brother has the full blown disease, and it produces all sorts of problems. he does not heal well. he is still in jamaica.

  8. i think u know my stand on this. i have two SS cousins and won't wish what they go through on anyone.
    i applaud those fighting against the sickness. There is nothing impossible for God to do.

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