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Genesis Foundation: Sickle Cell Awareness Campaign

Sickle Cell Awareness Campaign

by Debbie Keshi

I chose today to celebrate all Sickle cell warriors – alive or fallen – in a special way. Today I choose to describe from a personal, firsthand perspective on a public forum, sickle cell aneamia. I have heard persons living with sickle cell described in many terms – mostly uncomplimentary. Perhaps after reading this, the next time you think of sickle cell, you will think differently.

  1. There is no such thing as a ‘sickler’, its like saying a person with hypertension is a “hepertensioner” or a person with asthma is ‘asthmarer’ – there are only people who have sickle cell.
  2. Sickle cell disease is a blood genetic disorder, affecting the red blood cells, for which to date there is no cure (like many other medical conditions) except for the drastic bone marrow transplant which is not suitable for all. However, with advancement in medical science, it is a manageable condition, such that person living with sickle cell can live full, long and well balanced lives, contributing meaningfully to their families and society.
  3. Although many still die daily from sickle cell related complications, having sickle cell is NOT a death sentence. Many persons with sickle cell live well into their old age.
  4. There are different variations of sickle cell, with varying degrees of severity ranging from no crises at all to lots of crises with lots of complications
  5. Sickle cell besides being a physiological disorder comes with a terrain of emotional hurdles. There is battle of stigmatization which many persons living with sickle cell (especially in Africa) still face. There are the untruths and myths about sickle cell perpetuated person to person and even via social media. There is the rejection that comes with the terrain especially in romantic relationships.
  6. Managing a condition that comes with chronic pain is no cup of tea – people who live with sickle cell are some of the strongest people you will ever come across, physically and emotionally. People living with sickle cell DO NOT want or need pity – it is irksome to be pitied over a condition that you wake up to daily. Support? YES! Pity? NO!
  7. One sickle cell patient is different from the next. But the common thread is the hope kept alive, the fierce indomitable spirit and the joy to live the next day pain free. Its 19th June and I have lived today, painfree! A hearty cheer goes out around the world to all sickle cell warriors. Lets create the awareness, lets keep hope alive!

Despite its death rate, people have continued to defy it and its effects. Whilst lots of attention need be paid to researches in the treatment of the disease, prevention is the best way out for the world. Whilst the medical world continues to seek cures for the disease however, it is also important encourage, love and embrace the sufferers of the disease rather than stigmatize them and that’s the crux of the message.

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