Interview

An Interview With Timi Edwin – The Advocate Reaching Out To People Who Have Been Affected By The Sickle Cell Disease

   

Timi Edwin the Co- founder and the CEO of CrimsonBow Sickle Cell Initiative, a faith-based NGO that started two years ago. She reaches out to people living with sickle cell by paying medical bills, providing medication and psychological support.

Timi, through the foundation says she has saved a few people at the brink of suicide, just as she found hope with God, during her lowest moments.

In an interview with woman.ng, Timi tells more about her journey with sickle cell and her foundation.

About her

For almost 27 years of my life I struggled with my health and even reached the brink of death a few times. Apart from struggling with my health, I struggled with my self esteem as I battled stigmatization right from an early stage in life. This put me in constant depression and feeling of worthlessness.

Sometime 12 years ago, I became terribly ill just a week before university examinations, I cried earnestly to the Lord and begged him to take away the cross I was so heavily plagued with and turn my genotype around. At this point, I had an encounter with the Lord where He told me that like so many characters in the Bible, I was given the cross because I had an assignment that it will be used for. He assured me that the illness will never kill me, I will live long and that I had many lives to touch for Him.

It took me another Nine or Ten years of my life to finally step into my calling as I didn’t understand it then, but as I have journeyed with the Lord and sought after Him, He has prepared me earnestly for His Assignment.

I graduated with a degree in Mass Communication 10 years ago. I started my career immediately and have worked in the Human Resources, Procurement, Business Development, Finance and Administration departments. I have also worked in the capacity of Executive Assistant to C-Level Executives across multinationals and conglomerates. I earned an Executive MBA two years ago from Business School Netherlands and have been trained in Project Management and other courses.

I can also add that I am a farmer and very well on my way to becoming the female ‘Aliko Dangote’.

Her journey with sickle cell

My journey with sickle cell has been anything but a walk in the park.  I lived in constant pain physically and psychologically for a long time. I would also say that even though I had lived with the condition for so long, I did not accept it. I was ashamed of my status and lived in denial.

As I lived in denial, I was weighed down and didn’t really believe that I could amount to much in life. This mindset affected every area of my life and limited me from reaching for success. I dealt with this by first searching for ways to attain good health despite my condition. I eventually came across a Hematologist that guided me towards good health.

As soon as I began to feel better physically and have little to no health crises, my confidence increased. I became happier and had the strength to start reaching for greatness. With sickness out of the way, I can claim my health condition happily and stand as a testimony of someone who thrives despite her health status.

If she ever felt like giving up

Oh yes, many times. Twice on my sick bed, amidst a lot of pain and once when I experienced heartbreak from someone I loved and thought I will marry. When the heartbreak happened, suicide became an option but I couldn’t go through with it, then death became a prayer point.

On what has kept her going

God, my family, CrimsonBow and my friends. I also feel like there is so much for me to accomplish and so many lives to help. I am so excited living. I try to walk around giving joy, love and warmth; this somehow comes back to me, encouraging me at my low moments.

See also: A Day With The Oldest Woman Living With Sickle Cell Disease – Mama Asiata Onikoyi-Laguda

What CrimsonBow Sci is about

CrimsonBow Sickle Cell Initiative is a faith-based non-governmental organization that reaches out to people whose lives have been affected by the Sickle Cell condition directly or indirectly. We have evolved over the past two years by going beyond a widely read blog that educates, informs and encourages the sickle cell community to physically equipping Sickle Cell individuals with what it takes to fight and continuously push the boundaries and limits put upon their lives by the Sickle Cell condition.

We have been involved in the lives of many Sickle cell individuals through payment of medical bills, provision of medication and psychological support as well as organized several medical outreaches where we have distributed free items like sweaters, water bottles, medication, food and educational items within Lagos State.

CrimsonBow was founded on March 1st, 2015 and incorporated in October 26th, 2016.

The experience that led to its creation

When I was 27 and experienced the life changing heart break I spoke about earlier, all I wanted to do was die. My ex didn’t just leave me, but left me with words that crushed me and made me question my very existence. I moped around and cried for a whole year. At some point during that year, a dear friend challenged me to get busy. I wonder what I could be busy doing so I asked more people for suggestions on what to do with my life. To be honest, I thought I will end up learning a new skill to pass the time, but Greg Emuze, the co-founder of CrimsonBow, challenged me (us) to reach within, start a blog www.crimsonbowng.wordpress.com and share write ups that will encourage people with what we had both gone through with the sickle cell condition. We started as CrimsonBow NG but now are CrimsonBow Sickle Cell Initiative (www.crimsonbowsci.org)

With the blog starting, we got a lot of encouraging feedback and also requests that led us to starting and running an NGO.

The challenges she goes through in carrying out her work and how she tackles them

CrimsonBow started with no other vision than to disseminate information about how the condition can be cared for. Overtime it has grown and evolved to what it is today. Getting the organization to where it is has not been an easy ride. The very first lesson or challenge I learnt from was that no one wants to be associated with failure or something that is not recognizable. This was difficult because it had an effect on the support we got initially.

Support given to this NGO was almost non-existent. Perseverance and consistency were the keys in this instance. The organization slowly began to garner support as more of our work became seen and recognized. We also ensured that the visibility of the organization increased through the use of social media and traditional media. The more people heard about our work, the more they volunteered their support.

Another challenge we faced and still facing is funding. I discovered that I had to first self fund a number of projects and rely on funds from family and friends to build a track record. By building this track record, people began to trust our organization and thus donate to it. We also became transparent with funds inflow and outflow. This increased the integrity of the organization, and the donations that have come in to the organization. We still need more funding as the requests we receive and projects we intend to implement can be so inundating at times, but God is helping us.

On how the rate of sickle cell can be reduced in Nigeria

Nigeria has the largest cases of sickle cell in the world. About 46 million people (25 % of the Nigerian population) are carriers of the sickle cell gene. Every year, around 150,000 Nigerian babies are born with sickle cell disease and about 60% of this number are estimated not to see the dawn of their 5th birthday.  The children that grow beyond the ages of five suffer many health complications which put a strain on their finances, emotions, psychic and total well-being.

It has been discovered that due to the number of health complications suffered by the individuals that grow into adulthood, quite a number of them become emotionally unstable or low, most of them also end up living their adulthood off others becoming a major concern to their family and friends. The sickle cell challenge exists because of a number of reasons. Some of the reasons are low level of awareness, poor medical infrastructural facilities, high poverty level and stigmatization.

To address this issue, our assignment is to raise as much awareness about the condition as possible. We will specifically employ social media and traditional media platforms to pass across information on how to prevent and manage the condition. As they say, information is power, the more information is disseminated, the more control we will have over the condition.

We will also employ many fund raising techniques to ensure underprivileged people with the condition get the best health care they can get. Once people have access to health care, deaths will be curtailed.

Her plans for  her organisation going forward

We intend to keep organising our medical outreaches tagged ‘PROJECT KEEP A WARRIOR WARM’, it is aimed at educating the under-privileged on Sickle Cell prevention and management. We intend to distribute sweaters, water bottles, medication, and goody bags to children because cold, dehydration and lack of nutrients are common triggers of sickle cell crises. We also intend to carry out free genotype tests for adults and children that are unaware of their genotype status to help them make informed decisions when the need arises.

We intend to medicate at least 30 individuals living with sickle cell monthly through our project tagged ‘PROJECT MEDICATE A WARRIOR’.

PROJECT EMPOWER A WARRIOR: This project comes in two phases -Mental Empowerment and Financial Empowerment. It is observed that a lot of people living with SCD are mentally handicapped and will need to be liberated via inspirational/ motivational seminars. These seminars will aim to teach these individuals basic life skills like how to attend interviews, how to package CVs, skills empowerment, etiquette etc. It is also intended that a few people living with SCD are given tools to the worth of a specific amount of money to enable them become financially independent, therefore becoming happier, healthier and more fulfilled individuals

PROJECT TREAT A WARRIOR: CrimsonBow in partnership with as Hospital will introduce a Weekly Clinic for Individuals living with Sickle Cell. These individuals will have access to Hematologist to get treatments free of charge.

 

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