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Reception towards people living with sickle cell in the society is low- Oluwakemi Oguntimehin

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Oguntimehin

At age 18 Oluwakemi Oguntimehin was depressed and got tired of the stigma she faced due to her sickle cell disorder. She thought she wouldn’t live more than 20 years and saw no reason to wait till then. Kemi attempted suicide twice, got saved and realised she was indeed created for a purpose. In her pursuit of purpose and passion to help other sickle cell warriors, she founded Ignite Sickle Cell Initiative.

Oluwakemi Oguntimehin is a sickle cell warrior, a sickle cell advocate, an entrepreneur and change agent. She is giving hope in a not- so-hopeful society and lending her voice to the voiceless. In her words: “Never allow the stigma and discrimination you face to affect your mental health. Accept yourself for who you are, focus on yourself, invest in your personal development, sel- care, health, dream and vision.”

Kemi shares her very touching and inspiring story with me in this interview.

Childhood
Growing with sickle cell is not fun, I was always restricted for fear of being sick, despite that I was mostly sick.  Not knowing what is wrong with me, with hospital turning to my second home, having to take blood transfusion every now and then. While thinking about all these, trying to know what is wrong with my body, since I don’t know about sickle cell, nobody told me anything, not even the doctor, until I heard my teachers and classmates called me sickler and treated me differently. On the other side are pastors who will always come to pray for me in the hospital with revelations that I was a witch. Some of these pastor said I belonged to a strong marine spirit group; others labeled me as Agbana (money sucker) basically saying that I was sent to waste my father’s money on purpose and would only die after I have succeeded in turning him to a poor man.

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The stigma and discrimination were every- where from teachers to classmates, to nurses, to doctors who told my parents to forget me and focus on the other children because I might not live past 18 or 20 years at the maximum.

As a young child who just wanted to be normal, not restricted, not always using drugs, yet constantly being tongue-lashed by people, to others calling me witch, who see me as the cause of my problem, was something that was beyond me.  Thinking about it now, if only the right information was out there, I think my growing up would have been easier. To help children living with sickle cell have an easier childhood is the reason I decided to break the silence on sickle cell through the right information. I believe that without a rough childhood, I might not be passionate about sickle cell awareness. So my growing prepared me for what I do now.

Inspiration behind Ignite Sickle Cell Initiative
The ignorance surrounding sickle cell disorder, even among some medical personnel, is heartbreaking. Not to talk about the stigma and discrimination people living with sickle cell face in the society. I see it as people living with sickle cell are the ones who receive the blame, the torture of our parents’ mistake.  Despite the pain and what we passed through, the society still blamed us, some children have been abandoned, some parents refuse to send their children to school because of false beliefs. I believe people love to learn from other people’s experience. Using my life and experience to teach people on sickle cell will go a long way. No child deserve to be treated badly just because she/he has a genetic disorder. All these inspired me to start Ignite Sickle Cell Initiative.

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Overcoming Depression
I have been showing symptoms of depression but people don’t care about mental health here. But at age 18, I was greatly depressed.
I was exposed to bullying, stigmatisation and discrimination from childhood friends through my adolescent age. At a point in time, I didn’t bother about it again, but getting to university, the bully and discrimination got worse. People were mean to me on purpose; I was treated like I was not human. Imagine you are feeling alone even in the midst of a thousand students. From class to hostel, everyday, I heard people saying it to my face that they pitied my parents, who just wanted to waste their money. According to their belief, I would be dead before graduation. Hearing that everyday from different people added salt to the injury. People seeing me like I was not human, not talking to me, believing I’m less than someone they can talk to or some said my appearance disgusts them. I lost all hope and was determined to end my life.  I had two failed suicide attempts and, thinking about it now, I’m grateful it failed then. There is more to life beyond the stigma.

Reception since I started my organization
The reception has been great now; it has improved greatly. Though there is still so much to do, but people are learning everyday and the more aware they are, the more the reception they give. We still have a long way to go, but it can only get better.

Challenges people living with sickle cell face
The challenges people living with sickle cell face includes frequent painful crisis that can happen anytime, complications from anaemia, to avascular necrosis that can make some people to be on wheel-chair or bedridden, stroke, organs damage and so many more.

Apart from the health challenges, there is also stigma and discrimination, where many are denied job opportunities just because they live with sickle cell. Some are even fired because they are often sick.
Also due to the nature of the disorder, a lot of money is require for sickle cell management, with a lot of people not working and even those who work have to spend majority of their money on drugs and hospital bills. With the current situation of our economy and health, where we have to pay for everything and every services; a lot of parents cannot afford the management.  Some are in debt while some parents neglected some children believing it is better they die.

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Other Projects
Other projects include organising rural community outreach to educate community dwellers and also conduct free genotype test for children (0 to 10 years). Early intervention in sickle cell is needed to reduce high mortality in children living with sickle cell and we do this through our Be-Aware Campaign.
We also have Project X- Campaign where we create awareness in schools, both secondary schools and higher institutions. We also give out free routine drugs to people living with sickle cell on a monthly basis, which we call our “Wellness Clinic.”

Apart from Ignite Sickle Cell, other projects are meant to help people to be confident in who they are, using their story to change the narrative.

When we are constantly bullied, it affects our self-esteem. As someone who has battled low self-esteem, I know the importance of having a great self-esteem. Though a lot of people living with sickle cell battle with low self- esteem, this problem is not peculiar to only people living with sickle cell. It affects majority of woman and men, too. To help others who have low self-esteem, I have written a book that will be available in eBook as from next month, which means that distance is never a barrier to get anything, as long as you are on the Internet. The book is to help a lot of people build their self-esteem and become unstoppable in achieving their goals and visions.

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The role the society plays
The reception towards people living with sickle cell in the society is low. Unacceptance in terms of marriage, some parents will never allow their son to marry someone living with sickle cell. Some men think they are doing you a favour by dating you and use that as means to abuse you. People still believe women living with sickle cell can’t give birth and some believe living with sickle cell makes you a lesser woman, thus making some women living with sickle cell to hide their truth. They will rather do what they can do just to hide the fact that they live with sickle cell. I think things are getting better though and will always get better.

Challenges of being a Social Entrepreneur
The major challenge is funding. Getting funding from individual and corporate sponsors is not very easy. In Nigeria, so many people believe you must be rich to be a social entrepreneur and, with this mentality, people want you to pay high prices for some things. Some even believe the government or some big politicians are the ones funding you.  Volunteering is just becoming an in-thing now and many people want to be paid for volunteering their time because to them you are rich and wealthy. As a social entrepreneur, I often encounter people who belief sickle cell is not an issue and advise me to change my course to HIV or something else. Some people also think I’m too small to start a social enterprise.

Impact of my work
An average of 100 children have been receiving free routine drugs every month. Our community medical outreach has reached six rural communities which has impacted over 6,000 individuals directly. Awareness in secondary and higher institutions reaching over 2000 people, 20 people hospital bills has been paid and online awareness is reaching thousands of people.

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Being a Woman of Rubies
My impact to change the norms around sickle cell is also helping people to be confident in who they are. Using their story to impact lives makes me a Woman of Rubies.

To my Parents and those who stood by me through thick and thin
I want to use this medium to appreciate my parents, who never abandoned me and believe in me despite everything people said to them. I remembered people told my dad that he shouldn’t bother sending me to the University, but they believe I’m a gift to them. I will also like to appreciate Chief Bisi Ogunjobi for his unending support. I remembered when we needed a place for our monthly clinic, not only did he give us a building, but also furnished it. Thank you for supporting all our outreaches and our monthly clinic every time.

To women living with sickle cell
Never allow the stigma and discrimination you face to affect your mental health. Accept yourself for who you are, focus on yourself, invest in your personal development, self care, health, dream and vision. Enjoy life. Your pain and scars are the evidence that you are a survivor and a warrior. Believe in yourself that you can achieve anything despite the pain because I believe in you. If I can do it, then you can do it.

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