I was born in a small city called Ilesha, in the Western part of Nigeria. My parents were educationists hence they were considered somewhat strict. I grew up with four siblings, I was the second of five kids; I lost two of my siblings in year 2000 and 2010 to Sickle Cell Disease (SCD).
My mum brought us up almost single handedly; my dad was often away. I was a little over a year when my mum discovered I had SCD.
LIVING WITH SCD
Living with SCD impacted my life in so many ways; both negatively and positively.
As a teenager I battled with quite a lot of stigmatization especially because I looked very different from my peers in secondary school. I had somewhat stunted growth, yellowish eyes and looked very fragile.
I learnt to talk to my mum a lot and she would in turn advise me to tell God about how I felt. My parents were very religious; so they instilled in my siblings and me the need to appreciate our spirituality. I guess this is a big part of what helped me through life as one living with SCD.
As an adult, living with SCD has also affected my relationships with people especially in relation to getting married . I have had quite unpleasant experiences with parents of supposed spouses because of course no one really wants his or her son to have a wife who might be ill most of the time.
Dealing with SCD as an adult has been better compared to my childhood and teenage years; at least I learnt how to manage my health better and I am more careful. Every now and then though, I have had to cancel appointments, cancel outing with friends, and deal with crisis, mood swings, and hospital sessions and so on.
I established good relationship with my medical team and I have always had an excellent support system from my family and the few friends I have.
FINDING HER VOICE ON SCD
I schooled in Ghana and during this period I tried to find myself. I felt something was missing. I wanted to say something to the public about SCD but I found myself always timid when it came to SCD issues but quite bold on other issues.
After I lost my only brother in year 2010 in Russia, I decided to finally talk more about SCD i.e. to create the awareness and educate people but I became more occupied with my job as a Project Manager which entailed a lot of travelling; I could not quite make time to plan strategies on how to go about my awareness creation.
I finally got the bombshell when my friend and colleague told me her 1 year old son had SCD. I remember feeling extremely guilty because she categorically told me she didn’t know anything about SCD and here was I refusing to dedicate time to talk about it with people. I eagerly decided to work on creating awareness; this is when I came up with the Sickle Cell Support Group – Ghana (SCSG-Ghana).
SICKLE CELL SUPPORT GROUP
SCSG is a registered not-for-profit organization and a social health group that was formed in 2014 with the aim of creating aggressive awareness about Sickle Cell Disease (SCD), its causes and prevention, and providing educative support to persons living with SCD for improved quality of life. SCSG-Ghana is meant to reach out to persons living with SCD in Ghana.
So far, SCSG-Ghana has organized the SCD Awareness march which was done in June 2016 in collaboration with Lister Hospital, Sunlodge Hotel, Green TV, Business and Financial Time, Special Ice drinks, Chicken republic, Ghana Police, Green FM ad Ovation International.
I was in the US having my surgery done at this point but I have a very effective team that handled everything. I wasn’t thrilled that I missed it but I had no choice. SCSG-Ghana also has an awareness video which can be watched on our site on www.scsgghana.org or directly on YouTube
I believe SCSG-Ghana will do its own little part to gradually break the barriers that SCD has created by educating people. It is important that everyone knows their genotype. I believe this is the first step in avoiding SCD. SCD is inherited from carrier or suffering parents who have the double AS genotype.
FOR PEOPLE WHOSE LOVED ONES LIVE WITH SCD
I am of the opinion that people living with SCD need all the love and attention they can get. If you are a sibling, spouse, parent or friend, the best you can do is to be very loving. We do not need pity.
Some people tend to pity you when they discover you are living with SCD; but with me once I see you pity me, I start to avoid you. Pity is the last thing I need from anyone.
FOR PEOPLE LIVING WITH SCD
People living with SCD also need an excellent medical team. With me, for instance, I bond very well with my medical team, they are a very integral part of my life. I don’t hide or keep anything from my doctors. They know everything about my health. I also try to keep away from anything that causes me stress especially if I have the power to avoid it. I stay hydrated and keep to my doctors’ appointments the best I can; and as mama often advised, I rest even before I even feel tired.
I think as persons living with SCD we should also be careful of the kind of things we consume. Our organs tend to get damaged easily hence the need to consume the right kinds of foods. I recently became a dialysis patient because my kidney packed up as a result of severe damages from SCD, going through frequent infections, crisis and so on. I also think there were many foods I consumed that might have led to damaging my kidneys i.e. weighing down and overworking the kidneys. So now I don’t only battle with SCD but also with end stage renal failure.
ON TURNING 35
I turned 35 years in November, 2016 and for me it was the greatest joy ever. People always say I lie about my age because of my looks but I don’t see why I should tamper with my age. I live each day thankful for all the experiences I have had. I have been able to visit so many African and European countries. I have stayed in the US for a while and I can go whenever I want to. I have had exciting experiences with my work, I have met and made very good friends and I have a very supportive immediate and extended family. I can only stay thankful because I am not better than anyone. Ultimately, I think the best attitude in life is to be thankful in spite of what we think we are going through.