The story of Anne-Chantal
“I have Sickle Cell disease”.
It is a phrase that had often led to a little backward movement when I said to a man, a woman, a class mate, to people in my country of birth , Cameroon.
I have often wondered why that reaction, especially as I not contagious, (chuckles…)
My name is Ayuk Besong Anne-Chnatal and I am a 40 year old mother of two living with Sickle Cell Disease.
All through my early and late school days, I always had my condition infront of me. It was a huge staller.
As a child I was surrounded with don’ts. Looking back at those days, I now understand my parents. Having 4 out of 6 children with SS was most certainly a nightmare.
So, I grew up constrained in my mind, wondering how I could merge the courageous side of my life natured by an hero mum and the part of me society wanted me to be, that is the sick kid, thin, not wanted.
I am happy I took the route my mum showed me.
From age 19, I stamped my feet on the ground and said , STOP!. No more pity party, no more anger over what society said I was.
I studied hard, learnt about sickle cell, graduated from universty and armed with my new skills as a journalist, I decided to start talking about the silent disease called Sickle Cell Disease.
As a journalist, I started with reports on health, ensuring that in the news desk of the first ever private television station in Cameroon, Spectrum Television (STV), which I coordinated, every activity that had to do with Sickle Cell, every Sickle Cell Day was reported in the prime time news.
As a budding advocate , I transformed myself into a story. A story of courage, of perserverence and of hope. I used my story to encourage parents of SS kids to see their children in a different light. It was not easy at first, this more so because in Cameroon, Sickle Cell disease is given a cultural twist. Persons living with it are seen as witch kids, undesirables. With patience, perseverance and repetition I kept on moving, from advising warrior parents and kids to talking about myself infornt of fellow journalists, accepting requests for interviews, writing stories about my experience living with Sickle Cell disease.
Doing all these made me yearn for more, for a time when the silence around Sickle Cell will be broken, a time when the name Sickle Cell disease will become common and no longer create a stir or be met with ignorance as is the case in most African countries but also sometimes in the western world.
This desire made me tap from my experience as a policy communicator for a European diplomatic mission in Cameroon. Learning on how to push forward policy, I transfered the skills and competencies to my advcacy work, pushing forward my limits , reaching out to other warriors across the globe, lobbying for more communication on Sickle Cell in main stream media, and in all public information platforms and the effort paid off. In 2020, I was part of several persons affected by SCD who created the Africa Sickle Cell Alliance, a union of African SCD patient associations with members from 26 of the 54 countries in Africa.
I look back now at my life and I wonder if I was born without Sickle Cell, would I have had so much concern for certain things which I now have concern for, like access to healthcare, maternal mortality, rare diseases and the rights of persons living with it, learning to appreciate the little things in live which would have been just too banal? I do not know, but I believe that having Sickle Cell may have made my body weak, but my mind, my intellect and my view of life has been greatly powered up.
And so yes, I have Sickle Cell Disease and I do not give a hoot of what anyone may think about me.