DEBUNKING MYTHS 2: Sickle Cell Patients Die before their 20th Birthday and Living with the Label of “Half Die and Living Corpse.”

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Only very few people can ever truly relate to the agony and dread that characterize a life whereby a constant refrain is ‘you will die anytime soon’.
Nowadays, doctors make prognoses about certain conditions and illnesses like cancer. People suffering from such conditions are often given a specific time frame to live.

This is not the case with sickle cell patients. From the moment their condition is diagnosed, it is as if they are already one step closer to meet their maker, just from the looks and sometimes thoughtless comments sent their way. It is not even the least funny, to be constantly made to feel like each breathe you take is going to be your last.
A few months ago, I got engaged in a debate spearheaded by me on chronic disease sufferers and Stigma. It was interesting to note the varying degrees of comments and emotions that ensued. It was even more interesting to note that, despite living in an advanced medical and informative society, people’s attitude about sickle cell sufferers was still wrapped. Many referred to sickle cell warriors as ‘living corpses and half dies’ who probably have no right being born in the first place.

Understandably, life as a sickle cell is not easy and the constant threat of death is very much present despite medical advances. Nevertheless, it is reasonable to say that, from the moment we are all born, be we sicklers or not, life is a risk. We can die within hours of birth or live right up to 100 years and above.

It is disheartening to say the least that, when some people know you are a sickler, they look at you as if the next step you take leads you six feet under. The general view is that sickle cell sufferers cannot live above their 20th birthday and most often, if they do, their life span is expected to be between 42 for men and 48 for women.

I have received my own share of ‘dropping dead at any moment look’ and

was not expected to even be alive today. But then let’s take a check;
10 Years
 

20 years 

30 years 

40 years? … Getting there and planning to get well beyond.

Can I hear someone say keep dreaming? Well, dreams keep hope alive and hope makes us achieve the impossible.  I was recently tagged by Ms Monique Kwachou on a facebook post and following that link, I was more than impressed and even more hopeful. Oldest living person with sickle cell is 86!
That link took me to more discoveries of people with sickle cell beating the odds and living well into old age. You can check it out here: http://sicklecellwarriors.com/oldest-person-with-sickle-cell-is-83/.

Even in Africa, I have watched a then 60 years old man feature in MNET’s ‘Moments with Mo’ on sickle cell diseases. And I do know a few people who are well above 40 here in Cameroon still waxing strong. So all you brave warriors out there, keep fighting! If someone calls you living corpse or half die, just smile and move on. And when those agonizing battle pains strike and everyone looks at you as if you are already dressed to attend the heavenly banquet, smile still and tell them to relax because we are too mean hmmm I mean too stubborn to die!

The battle may be long and some may fall on the way, but the fight goes on. Keep the positivity, keep the faith. Anyone of us can also live to see our children’s children!

ARREY E. AGBOR-NDAKAW

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Author: ARREY - ECHI

I am a Sickle Strong Warrior and Advocate. Welcome to my space.

0 Replies to “DEBUNKING MYTHS 2: Sickle Cell Patients Die before their 20th Birthday and Living with the Label of “Half Die and Living Corpse.””

  1. Wow! You sure are some piece, or say, voice of hope to many. Keep fighting the good fight.
    Honestly, I was told that Sicklers don’t live beyond 24 and I have seen some far relatives who didn’t even make it to that age. Some barely passed 24. And then I later met you… I was like:
    “No, no! She must be suffering from something else, not the sickle cell I know”
    But again, what do I really KNOW about sickle cell and its struggles except rumored myths? Thanks for the light. Your book and blog have taught me a lot.

  2. Myth or fact…that stickers can’t have babies,and if they do, they re likely to die in childbirth; that they can’t do sports, that they have exceptionally high IQ’s; that even those with the AS gene are as “half-die” as the those with SS. What to believe what not to believe?

    1. Thank you Sis Maureen. Those are points I plan to write on subsequent ‘Debunking myths’ series. Gradually, I hope to bring in medical experts to clarify us on such issues. Pregnancy for eg is high risk for everyone. True sicklers have a slightly higher risk than the average woman but there are many mothers out there with sickle cell. Let’s keep educating and debunking the myths.

  3. Ma Arrey, you are truly an asset this generation. You are an inspiration. May the good LORD, the giver of life continue to keep and bless you. As far as our eyes can see we shall surely possess. My people perish for lack of knowledge. Nat.

    1. Amen Nat and thank you so much for stopping by to read and for the encouraging comments. The fight is on and with God lots become possible. Our people really perish for lack of knowledge.

  4. Ma Di, thank you very much for stopping by. That is the generally held belief about sicklers. True enough, many die young. But the below 20 years life span is a fallacy which is due largely to anabsence of adeaquate knowledge and education. I am not an expert but I know my situation well enough to tap from my own experience. Thankfully, I have a family who didn’t believe all these age bla bla and so they cheered me on.

    Let’s keep raising the awareness. Hopefully, many more will look pass these rumoured myths. I am glad you find my book and blog helpful. Thank you for the constant support.

    1. Thank you very much Precious M, for stopping by. As you said, that is the belief many errenously grow up with. There is a need to speak out and debunk these myths. Keep on coming and reading, thank you.

  5. It’s a pleasure knowing how strong and poised you and many others living with whatsoever setbacks are fairing and raising awareness to the cause.Whatever people may say or their attitude towards sicklers,we’re happy the awareness is taking a broader dimension.I recently lost a friend in this battle but i must assure you he was more than a soldier.He lived his life to the fullest and was an example to many.Keep the faith!!!

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