Wednesday 19 June 2013

Sickle Cell Awareness Day

Today (June 19th) is World Sickle Cell Awareness day created by the United Nations.......... It's days like today that make me wonder about my very existence.

There is a lot of energy being put into the awareness of sickle cell, it's prevention and its possible cure, but sadly the same effort hasn't been put into trying to understand how people live with the condition. 

The concept of prevention scares me. I know it's coming from a selfish place, but let me explain. Due to my mother's rare genotype, when my parents got married they couldn't identify she carried the Beta thalassemia trait. So my parents sired me without knowing I was a sickler....... So the question is, if they had of known would I exist? 

Today in Nigeria, many churches have taken up the role of not sanctioning marriages between a couple who both have the sickle cell trait. I find this very disturbing!  

The decision of marriage should be between the two people to want to go on that journey. Sickle cell awareness should help the couple make a well informed decision about their journey but it should not define whether they take the challenge or not. 

Don't get me wrong, it's not an ideal situation, but hell there is a 3 in 4 chance of them having a non-sickler. In addition due to advances in medicine it is possible to test early enough in the pregnancy to find out whether the child has sickle or not.  There are options for those individuals that decide to take up the chance of having a sickler, but that is for another post.

Being a sickler does suck balls but dammit I exist, and I am fully functional. I have achieved a lot in my life and I'm sure my parents are proud of me and are happy they had me. 

Sickle cell awareness should also be about celebrating our Sickle Cell Warriors. The ones that come out swinging, despite the odds.  So today, spread the word about Sickle Cell, research it, understand it, and by all means HUG A SICKLER, they'll appreciate it.

Toddles!!

Found this video of another sickler, Prodigy from Mobb Deep (his status was made famous by 2Pac)

No comments:

Post a Comment