THESEGENES – my passion for sickle cell awareness
‘Every family in Nigeria has a sickle cell story’
By Oluwatosin Abisona Bucknor (1981-2018) in SICKLE CELL NEWS
At the African Leaders Forum held in Ghana, I was asked a simple question – what are you passionate about? My initial answers could have been one of several – writing, creativity, life. But when I stood up to answer, I said the one thing that has not defined me, but has always been a part of my consciousness- sickle-cell. I tell people that it is hard to explain what it means to live with sickle-cell. I find that sooner or later, it feels like I am whining; can they really understand what it is I am speaking about?
Once you are 21, the crisis stop. Another myth I believed till I spent my 21st birthday in the hospital in a lot of pain.
For me, when I stood up and said I was passionate about sickle-cell, I meant that I was passionate about ensuring that children living with the disorder would not feel like they had nothing to live for. I meant it was important for people to know that sickle-cell is a disorder that can be managed. I wanted to show that it was okay to feel all the emotional angst that comes with the well publicised physical pain. I was passionate about giving people with sickle-cell, a voice.
And so the THESE GENES SICKLE CELL PROJECT began.
Chioma Nwagbara was also at the conference and was passionate about infant mortality but was willing to work on this project. Together, we began the journey and got Zapphaire Events (my sister Funke Bucknor-Obruthe’s company), and s.h.a.r.e, a social network, on board as partners. The project kicked off with a CELEBRITY AUCTION. The idea was to give people the opportunity to spend time with some of their most admired and favourite celebrities, by bidding on them. You can spend time with any celebrity you can imagine, from Funmi Iyanda, to Fela Durotoye, to Bimbo Akintola and Ruggedman.
THESE GENES will publish a book titled ‘comeSHAREwithme’. It will be a collection of poems, essays, short stories and pictures by young adults on how sickle-cell has affected them directly or indirectly. Judges including Jumoke Verissimo, Kaine Agary, Emilia Asim-Ita, Tolu Ogunlesi and so on, will afterwards determine which entries make the book. The aim of this is to allow people open up and express themselves by using creativity and the arts as a medium. In fact, some designers will also join this initiative by creating a line using Denim as fabric – all in the name of awareness!.
We intend to demonstrate to the world that sickle-cell is just a disorder, not the sum of who we are. It is our cells that are sickled; not our hearts, not our souls, and definitely not our minds.
Every family in Nigeria has a sickle-cell story. What is yours?
Lawyer, actress, singer, songwriter, SCD activist Mrs. Tosyn Bucknor-Payne passed away on Monday 19th November after an undisclosed sickle cell complication