I am one of the few sickle cell warriors type SC,who does not agree with what is written in the books that HBSC individuals have sickle cell mildly,This may be true for some but for me,it isnt.
I was diagnosed of sickle cell at age 18,i had just lost vision in one eye with the other unable to see clearly and i was by inchmeal at the verge of loosing both eyes and going blind.My PVC was so low,i had lost reasonable amount of weight and i was so pale,The lab scientists at the hospital in ilesha,osun state ,Nigeria had dropped my genotype test had given me a deep hug when i returned the results to him.This were the events that unfolded the few minutes before my opthalmologist said to me”you have sickle cell”All this happened few days to my 19th birthday.Before then,i was completely ignorant of my sickle cell status.
Before diagnosis,i lived ignorant of the fact that i had sickle cell.As a child,my view of the frequent pain and weakness was that i was just a sickly child of the family.After diagnosis,i remained ignorant as no one still gave me full information as to why i had sickle cell.My early days in the university were hell as i went from one complication to another,seemingly through the valley of shadow of death to endure moments of anxiety,pains,denial,loneliness,degradation,stigma,bemoaning my fate even without full knowledge of the disorder,till i decided to read more about my disorder and know whats exactly wrong.
I eventually met someone who shared his story of late diagnosis too and how he had been earlier treated as a witch for spending all of the family income.So i thought diagnosis diagnosis always came later some people got diagnosed months after they were born.
Why i decided to advocate
So after episodes of pain acute chest syndrome,osteomyelitis ,Retinopathy,after being treated unfairly at school and seen as a lazy student,having to take an extra year in the university,After being denied drugs and medical practitioners who say type SC is just like the sickle cell trait ,after being denial medical treatment for years and meeting another individual who went through same and even worst from his own family,i felt strongly that there was still lots of people who were ignorant of their sickle cell status,doctors who were not versed in sickle cell management and i saw the need to reach out to people ,educating them about genotype,compatibility and long term care for those who are already diagnosed.I started with close friends,encouraging them to take the test but as one who was not schooled ,i ended up not just giving sentimental advice.Some would take it and others wouldnt.Also as one who was stigmatized,i felt the need to educate people,to help bridge the knowledge gap of the disorder ,debunk myths and fight the stigma.I discovered later that to educate people and bring them to understand and i might have to put my story at the forefront.
I started my campaign on social media[FACEBOOK] and founded a group firstly called PEARLS to help improve global awareness of SCD and to bring people who live with sickle cell to understand that they are pearls.Shortly after,i met other people who live or cared for those with SCD,i like to call them PEARLS,till i learnt that warriors was commonly used in the society.
Living with sickle cell had been a difficulty journey,surgeries,pain meds,daily routine drugs,psychological complications etc.However over time and with much reflection ,i accepted that i was born this way and i could have some other disorder if i didnt have this.My mindset about SCD changed and i stopped seeing sickle cell as that which was to torment me but as an ability as i begarn to discover that i was strong to overcome all i had .Sickle cell also made me plan my life in a special ways because i never knew when i would be down with crises.It is a beautiful thing that i can use my education and ignorant background to help educate others,i have also learned over the years how to listened to my body and all that i have is manageable condition.Today,i am no longer the young girl crying why me?but one who constantly receives request asking me for advice on how to manage this disorder.Today i give all the medical advice.Today i live with one eye caused by late attention to sickle cell retinopathy but i continually to unrepentant advocate for the disorder that has made me.
IF YOU HAVE A STORY ABOUT SICKLE CELL TO SHARE
WRITE US ON 08030960242
WE CAN KEEP IT ANONYMOUS IF YOU WISH
BE THE REASON WHY SOMEONE IS ALIVE TODAY