A Konnect Africa Interview with Toyin Adesola: A Fighter and An Advocate for People Living with Sickle Cell Disorder

It is another Konnect Africa Interview. Wow! It is great to be alive.

Today, we feature a fighter, a go-getter, an amazing woman who has braved the odds of Sickle Cell Disorder and has become an Advocate for those living with the condition. She is also an author, a social entrepreneur and a speaker. Indeed, she is a shining light. Her experience is a touching one but she has surmounted all of that and is now focused on making a difference in the lives of other people like her, who are living with the Sickle Cell Disorder.

Be inspired today. Take a chill pill and read her interview here>>>

Please tell us about yourself – your roots, educational and professional background, your hobbies etc

Toyin Adesola  is  an author, social entrepreneur, speaker and advocate.  I graduated from the Lagos State University, with a degree in Economics in the year 1992.  Born in 1965, I started my primary education was at the University of Lagos, Staff School and I did a stint at our Lady of Apostles Secondary School, where I had to pull out due to health reasons.  I am the Executive Director/ Founder of Sickle Cell Advocacy and Management Initiative a non-profit/nongovernmental organisation. I also run a confectionery business Just Amai. I am an alumnus of Enterprise Development Centre, Pan Atlantic University and a Vital Voices Fellow.

I enjoy reading, writing, listening to music, going for concerts/stage plays and handcraft and I have a passion for youth empowerment.

You have lived with Sickle Cell for over 4 decades; Very simply, what is your secret formula?

I don’t think I have a secret formula, unless having a strong faith in God is a secret formula. Other than that, I am someone who has been able to understand my body, know what to do and what not to do, and the importance of having a positive mindset in overcoming any health challenge. But ultimately, I can say it’s only God. I am privileged by His grace.

What are some of the myths surrounding living with sickle cell?

There a number of myth surrounding Sickle Cell Disorder (SCD). One of them is that you do not live beyond 21 years and that if you are able to live beyond that age, you will not have sickle cell crises again. I am almost 50 and I still get crises once in a while. Medical management and understanding of the disorder has made life expectancy a bit better. Also as you grow older, it’s not that you don’t have sickle cell but the numbers of attacks you have are reduced because you have a greater understanding of your body, what to do and what not to do.

Another myth is that people with sickle cell cannot have children, which is absolutely false. I know many people with SCD who have children. The worst myth I have heard is if a woman with SCD gives birth to a child, she will not have crises any more. This is absolutely false.

Strictly speaking, is Sickle Cell a disease? In layman terms, how is Sickle Cell contracted?

Sickle cell is not a disease in the sense that you will catch it from someone. That’s why in African countries we call it a disorder, because when people hear disease, they think it’s contractible. Sickle Cell Anaemia Disorder (SCD)  is a hereditary blood disorder of the red blood cells.  That means you inherit it from both parents. It is so called because it occurs commonly when the child inherit the S gene from both parents. This is commonly found when both parents have the genotype AS, then for each child born, they have a 25% chance of having a child with sickle cell disorder.

The S gene was brought about as nature’s way of protecting one against malaria. But along the way, there was some sort of change, which resulted in the multiplication of the S gene. The result is a red blood cell in form of a farmer’s sickle or half-moon. The red blood cell of a person with sickle cell is sickle and hard, while those of a person without sickle cell is pliable and soft causing it to move up and down the blood vessels easily.  However the sickled cells because of its shape, can pile up and get stuck in the blood vessel, resulting in excruciating pain called Crises.

Other symptoms and complications as a resulting of the sickled cell include amongst others, intermittent and extreme bone pains (called crises), anaemia, jaundice, chronic skin and bone ulcers, blindness  and stroke and organ damage.

For you, what is the hardest part of living with sickle cell?

The hardest part of living with sickle cell is quite a few. For me it’s the numerous medical complications I have encountered which required a number of surgical operations. Another is due to the general lack of accessibility for people with disabilities in Nigeria; it can be difficult moving around. However the very hardest part is dealing with the crises pain because the pain is so bad if you are not strong, you will wish to die. People underestimate the pain we go through. It’s worse than labour pains and as I described to someone, it is worse than slamming your finger through the car door and breaking a bone, which I have experienced. The pain can last from a day to 2 weeks and sometimes the pain medications don’t work. It is so excruciating as a result your whole life can be disrupted because of your numerous hospital admissions.

I think you are fighter; when and why did you decide to start an NGO to champion the Sickle Cell cause?

I started the NGO after I wrote my autobiography “Still Standing”.  Following its publication in 2005, I was invited to a TV program hosted by Funmi Iyanda, where someone mentioned I can be an advocate for people with SCD. As I got more exposure from the book and calls, I realised there were a lot of issues with regards to sickle cell disorder and support, especially in the context of Sickle Cell Disorder. Issues dealing with sickle cell in Nigeria had merely scratched the surface.  A year later, I had a heavy prompting from God to start. In 2008, I launched the Non-governmental Organisation.

Do shed some light on your NGO; its name, mission, vision and goals?

Sickle Cell Advocacy and Management Initiative is a non-profit, non-governmental organisation with a vision to have a Nigeria  where sickle cell  disorder is reduced and  people with sickle cell and their families live healthy, positive and impactful.  Our mission is to therefore empower and improve the lives of people with sickle cell anaemia disorder, to live healthy positive and impactful lives  by  educating, creating awareness, and providing support through  various channels.  Our goal is to:-

• provide health care /management for people living with Sickle Cell Disorder through free provision treatment and medications via our monthly free clinic,  XTRA CARE CLINIC
• Equip , empower, inspire, educate, motivate and change the mindsets of youths living with sickle cell to break stigma, create a healthy life style,  and a better future through our CLUB STILL STANDING
• Create awareness with regards to the importance of knowing your genotype, which we do through our youth-focused dance project TOUCH A CELL DANCE-A-THON . Our goal is to educate children and youths in Public and Private Secondary Schools at various Local Government Areas on the disorder providing free genotype tests.
• Advocate for issues dealing with sickle cell disorder, from stigmatisation, poor government policies, hospital mismanagement through proposed Radio and TV programs.

What has been your experience in running your NGO?

It’s been challenging, especially when it comes to do with funding and human resource. Despite Nigeria having the largest number of people living with sickle cell in the world, government policies towards management is limited. Organisations are more focused on health issues like, HIV, Malaria, Polio  etc.  There is also still an immense level of ignorance in society regarding sickle cell among health practitioners, parents, family and even the person living with the disorder.  It will amaze you how some doctors and nurses treat people with sickle cell. It saddens me to see families and people with sickle cell struggling.

 What are the biggest successes you have recorded so far?

I think one of our biggest successes is the ability to provide over 60 people with sickle cell free drugs and treatment on a monthly bases, apart from that we have been able to educate over 2000 youths on the importance of knowing there genotype.  But our proudest moment is when we have supported a few members with their health or societal issues, and the feeling you get when they come show their appreciation.

How is SAMI funded? What level of support have you received from donor organisations and government agencies?

SAMI is 90% self-funded through my purse, though we have been able to obtain small donations and supports from a few individuals and organisation, including Exxon Mobil.  There has been no support whatsoever from government agencies as it’s still a struggle to get government to realise the implications regarding the disorder. A bill had been presented in the National House of Assembly, yet it hasn’t even got passed any stage.

From your experience, what words of wisdom would you give to young people who are interested in starting an NGO?

Don’t go rushing into starting a non-profit. It may seem easy but the road can be rough. Take time to find a mentor, if possible understudying/volunteer in an existing NGO/Non-profit.  Make sure you have empathy and passion for the cause you are focusing on to understands your beneficiaries.  It is important to build a good structure as passion and money can only take you so far which includes choosing your trustees/directors carefully. Finally persevere. Remember the reason you are doing this is for the other person you hope to impact, if you cannot see that, then it is better not to get involved

You are also a published author. What is the title of your book and what inspired it?

Yes. I wrote a book was an autobiography of my experience living with Sickle Cell Disorder, called Still Standing. I would say my inspiration was a combination of God’s grace upon my life despite all I have gone through and my Grandmother who kept encouraging me to write a book.

Tons of Nigerians live below average, skirting poverty by mere inches; can Sickle cell be managed without surplus financial resources? Does the government or other bodies offer any subsidies in relation to this ailment?

I say it often and I will say it again; living with sickle cell can be capital intensive.  It will even be more challenging for people in the grassroots. What with the frequent hospital admission from crises pains, not to talk of other sickle cell complications that occurs. You therefore need to be extremely financial capable to be able to manage a challenge with sickle cell because some may have other complications along the way. A person with sickle cell has to live averagely on  N2,000 ($10) a month on drugs.  How many families can afford that? Unfortunately, there is no subsidy whatever by government, unlike subsidies you find in HIV and some other health issues.

In this age of improved awareness, I daresay the message of prevention is being disseminated even to the grassroots; would I be right to believe that?

Hmmmm… I won’t say it’s really being disseminated. You will be surprised that in the so-called cosmopolitan cities, people don’t have a good grasp of sickle cell and its complications and / or implications. We generally underplay the impact it has on child living with SCD.  It is therefore worse among people in the grassroots. People are ignorant thus creating a stigma. We have fathers abandoning or disowning the child, saying they have spiritual issues. We have parents using wrong treatment for their children, or even seeing the child as a burden when it was their fault in the first place. People underplay the importance of knowing their genotype and sometimes we tend to focus on the relationship between the husband and wife, rather on what the child would go through.

Religious organisations i.e. churches and mosques are generally responsible for joining couples in marriage; do you believe it is also part of their social responsibility to inquire into matters of genotype etc?

I think to a degree it is, because if not well prepared, having a child may be emotionally and financially draining depending on the capacity of the couple. There have been broken homes because of such relationships and the birth of children who have SCD. However, it is not enough to just tell intending couples to produce their genotype test which is what is being done today. These couples have to go for proper genetic counselling so they understand the implications of what they may go through.  Telling them they can’t marry without adequate information will only lead couple to sometimes falsify results or just going ahead with the marriage without proper preparations. We also have to educate them into going to more than one laboratory test for their genotype, because we have a number of laboratory genotype test errors, resulting in the couple marrying, then when they find out they have a child with sickle cell, there is abandonment, and at times accusations of infidelity.

Talking about young people, what was childhood for Toyin Adesola? What are your best memories of family-time?

Despite my health challenges I had a few fond memories. My loveliest memories where spending time around the TV, going on holidays. My best time was with my Sister. We went on a holiday, and one of them was on a ship once, though I took ill it was fun. In our days it was not about video games. It was about going out, having fun with your friends playing things like ten-ten, Chinese-skipping etc.

Education? Career? Was either ever marred or derailed because of your health status?

Due to my health challenge, I definitely had some disruptions in my education. I had to quit secondary school at form 2 due to a health complication that occurred and left me incapacitated for over 6 months. Definitely with my over 200 hospital admission, 5 operations and 15 blood transfusions, yet I persevered. I insisted on going back to school after a 4-year hiatus. I took a crash course for West African Education Council Exams (WAEC) and Joint Admission and Matriculation Board (JAMB) over a space of 2 years, and got into the Lagos State University (LASU) in Nigeria. Even through those times, it was still challenging. I was using crutches to walk at the time and I was still bogged down by crises, resulting in me getting an extra year. Consequently because of my health, it was recommended that I avoid gaining full employment. That’s when I decided to be self-employed. I now run a cake business, something I had started in a small way back in school.

Any regrets thus far?

Regrets? Not at all. Some people might say with all I have gone through I should have regrets, but the truth of the matter is this – I am just thankful for who I am. Without even these challenges, I may never have evolved to who I am today – Stronger, Resilient and Determined.  The only thing I would say is that sometimes I am disappointed because my physical challenges seem to slowing down the achievement of  some things.

In another decade, what do hope to have achieved both in your personal life and otherwise?

In 10 years, I want to be like the next Nick Vujicic. I want to be known as an Inspirational Speaker, going around inspiring many to live positive lives despite the challenges they face. I also hope to host a well-recognised TV talk show. For SAMI, I want to have achieved running a mobile clinic that provides adequate healthcare for people living with SCD in towns and villages, being replicated around the country. I also want to have achieved the enactment of a recognised sickle cell policy providing adequate support and management to people with the disorder. Finally we aim to have started a social entreprise.

 Speak to that young person living with Sickle Cell Disease.

If you are living with sickle cell disorder, I want to encourage you that having the disorder is not the end of the world. It is important that you study and understand your health. Know what triggers your crises. It is important we drink plenty water, as a person with SCD must not be dehydrated. Keep yourself warm at all times. Take your medication, be confident in yourself and learn to know what you can or cannot do. Space yourself.  Have faith in God and pray.  I always say YOU MAY HAVE SICKLE CELL BUT SICKLE CELL DOES NOT HAVE YOU.

For those who would like to be a part of what SAMI is doing, how can they get involved?

You can be a part of SAMI by volunteering your time in the areas of doctors, nurses, pharmacist, media and communication, graphics and web designers, project/event planning, logistics, refreshment  or through your donation for medications, medical supplies, genotype test, venue, buses,  paying for peoples hospital bill and surgeries and more. Email us at info@sami-ng.org, or call +234-809-800-7264  for more information on how you can be of help

Life is…

Life is Possible. For us at SAMI, we believe that despite whatever challenges we face, having a fruitful and positive, impactful life is possible.

Inspire a young African in one sentence…

Try to find GOD’s purpose and in all, Let GO and Let GOD

Many thanks to sharing with us, Ms Toyin Adesola. You can follow her on twitter @iamtoyinadesola, or like her Facebook www.facebook.com/toyinadesola, or follow her on Instagram @toyinadesola

You can also follow her NGO @samiupdate, or like them on Facebook www.facebook.com/touchacell, or see their videos on Youtube – SAMITVNG.

Find someone living with Sickle Cell Disorder and show him/her some love. God bless you.