Osasele Esangbedo is the Founder of Noah’s Ark Foundation For Sickle Cell, a support and advocacy group, an NGO that is focused on supporting the less privileged, sickle cell patients in the community.
Born with the sickle cell disease, Osasele, who used to be the 5th child became the 4th after she lost her immediate elder brother to sickle cell. This made her father scared, especially with the myth that sickle cell patients die at the age of 21.
Now over 40 years old, Osasele, in a chat with Tribune spoke about her father’s fears when her brother died.
I was born at the Shell Clinic along with my late brother and was thus diagnosed early. So I grew up knowing about my status and I was introduced to medication at an early age. And I was always told to avoid stress.
I had dental issues at age 5 but my first major crisis occurred when my immediate senior brother died. He too had sickle cell disorder and he passed on at age 21. In those days, and perhaps even now, many people believe that those with the disorder do not live beyond 21 years of age. So, when my brother died at 21 years, it was not easy for us.
My brother was three years older than me and it was like, Okay, so I have three more years to live! It really got to me when my father saw me some hours after we lost Odiase my older brother. I could see that a sense of helplessness had enveloped him. You know that kind of feeling that “Oh dear, this one too will go in the next three years!”
When I was 18 years I had acute chest syndrome. Actually that was when it became clear to everyone outside my immediate family that I am SS. After that I suffered from Osteomyelitis. It was found that antibiotics were not working very well, so I had a surgery (sequestrotomy) to correct the Osteomyelitis and afterwards was given crutches to help me in my movements.
I was expecting to die at 18 years. So I was happy to cross that landmark. Then I thought I would die at 21. Still that came and went. Now I am over 40 and counting! Living life took out the fear of death. So I am happy. I know myself, know when to rest, when to say “STOP”. I try to eat right (vegetables, fish oil and foods that give me protein). Very importantly, I take my drugs regularly and, as a Christian, I give God all the glory for where I am today.