Founder, Sickle Cell Advocacy and Management Initiative
1. Introduce yourself
My name Toyin Adesola, I am the executive Director of Sickle Cell Advocacy, a lifestyle consultant, social entrepreneur, sickle cell warrior and advocate, inspirational speaker and author.
2. How do u feel turning 50
It feels great. Have lived with sickle cell all my life. The attitude of people saying persons with sickle cell can’t live above 21, it is good to be able to break those myths. More so, with the amount of challenges I have heard, its great joy to able to achieve the 50 fit.
3. What do you do for a living?
I run a non-profit/ non-governmental organization Sickle Cell Advocacy and Management Initiative which focuses on creating awareness about sickle cell and providing support for those living with it. I also run a business as a lifestyle consultant and have healthy sweet and dessert and wellness company.
4. Why Sickle Cell Initiative?
Having lived with sickle cell anaemia disorder an inherited blood disorder, it is my passion to see people with perceived metal and physical limitation, live healthy and positive lives. I understand the challenges that come from having the disorder. Sickle cell disorder despite Nigeria having the highest number in the world is still steeped in ignorance, poor awareness and no proper health management policy toward it, I see the trauma people with sickle cell and their families encounter and our aim is to bridge the gap to help them overcome whatever challenges they face physically and mentally.
5. How long have u being running this initiative?
We have been running the initiative since 2008, focusing on creating importance of knowing your genotype and understanding what it is too have sickle cell. We run a free monthly medical outreach, the XTRA CARE free clinic for people with sickle focusing on consultation and free drugs as well as going into secondary schools organizing a brand program tagged the touch a cell danceathon educating them on knowing their genotype and doing free genotype tests.
6. How do you power the initiative projects and programs?
The initiative is for now 70% is self-funded, while the remaining is among friends, family, individuals and few corporate organizations. Unfortunately funding for sickle cell is not as prominent s funding for HIV, Malaria, tuberculosis etc. despite we having the highest in the world.
I think our greatest challenge is ignorance. Ignorance on the part of society, government, doctors/medical, personal and on the part of families with sickle cell children and those living with sickle cell itself. Another challenge we have is funding, especially when it comes to helping people with sickle cell with serious health complications.
8. Do you ever think you will get to 50?
At the beginning I didn’t, especially in the early years of all the major complications, I had with sickle cell, but as I grew deeper in my relationship with God, I had an inner conviction that things will be okay.
9. On the aspect of you being an author, what inspires you into writing?
I think people inspire me. I am inspired by the educated mind and the ability to see God in our circumstances. The ability to change a person mindset and help them think in another way is very important to me. Most of the time we are lost in a paradigm and we allow our circumstances to control us. We remain limited in knowledge about things that will help propel us beyond those limitations.
10. Can you talk about your books?
The first book ever written was an autobiography “Still Standing”, which shared about my traumatic challenges living with sickle cell and the tenacity at which I was able to overcome to which I just also launched an audio book version. My latest book: “The Misadventures of Oga and Madam AS”, which started as a weekly tweet chat with the same hashtag educating people about sickle cell, treating people with sickle cell and managing it. I wanted to write a book that was not only informative but interesting and captivating to read, so I wove around it an intriguing story about a couple with the AS genotype.
11. How is the reception to the messages of the books?
The first book “Still Standing” is still having a good reception. In fact as a result of my story I appeared on numerous television and radio shows as well the print media. It was even what got me to start the NGO, having received feedbacks from people dealing with the challenges of sickle cell disorder. The latest book “The Misadventures of Oga and Madam AS” has just been launched but so far the few feedbacks are very favourable.
12. How do you combine all these professions together?
It can be pretty challenging combining all together, especially when you do not have the adequate staffing with the right skills to work. For the NGO we rely predominantly on volunteers. I use a lot of social media to reduce some of my workload and try and outsource technical staff to reduce the workload.
13. Is there a man in your life?
No there is not at present
14. If yes, describe him; if no, give reason
For a person living with a health challenge it can be difficult getting people to understand and sacrifice a relationship especially as during those times knowledge was very limited. This is especially true for people with sickle cell in a relationship especially where in-laws are concerned. For me if you cannot manage with my health challenge then there is no reason for us to be in a marriage because understanding will be difficult. Over the years I have just gotten busy and not really focused on the need to have a relationship. It is our society that says marriage should define you, which is unfortunate as marriage does not.
15. What’s your advice to people out there living with sickle cell?
I would advise people to be more informed about their health challenge. Always get a second opinion about your health as not all doctors can treat people with sickle cell. Secondly have faith in God, believe you can accomplish all things. You have sickle cell, sickle cell does not have you. So do not let it control you. Thirdly take your medications, take plenty of fluids, and avoid physical and mental stress. Surround yourself with people that will encourage, mentor and inspire you not pity you. And finally have a positive attitude to life. I have gone through numerous hospital admissions, surgery etc. but I never allow it to dictate my circumstances. For parents believe in your child, support and encourage them, don’t blame them
16. What’s your advice to your fans?
Live purposeful and impactful lives. Find your passion and use it to help others not just yourself. Be proactive, acquire knowledge to amplify your skills and in the knowledge get understanding. Finally Trust God and endeavor to fulfil His will and purpose for you. This will take you far/