54 years Toyin Adesola is the Executive Director of Sickle Cell Advocacy and Management Initiative. In this interview with Sunday Ehigiator, she talks about living with the sickle cell disorder and how she has managed it over the years. Excerpts:
How was growing up like?
Growing up was very challenging. I used to joke that the hospital was like my second home because I was always in the hospital. I didn’t understand what it was initially but I just found myself in the hospital being injected, and all that. It was a regular thing to the point that my education was disrupted. I was always the second or last in class not because I didn’t know anything but I was not able to keep up education, I was always in the hospital. By form one I entered secondary school but something major happened to me. My health was mismanaged. The mismanagement of my health caused my hips to get dislocated.
How old were you then?
I was about 14 years old. I was just entering form two then and I remembered they had to put me in POP, my trousers were just POP, and I was in bed for about six months I couldn’t move. I was just lying there. So, when I got out of it, I started using clutches but of course by then my educational life was deducted, and my parents told me to just stay at home that they were going to manage me. For a long time, I was in the house and we moved to Ilorin where my father was posted. I tried to manage staying at home but it was really frustrating. I kept telling them I want to go back to school, I want to do this and finally, they succumbed and they did by getting a teacher to teach what I should have learnt from form one to form six. I did it all in two years; JAMB and WAEC in one year and I entered Lagos State University where I studied Economics while still using clutches and you know in Nigeria; we are not disability friendly. My class was on the third floor, so I had to climb stairs every time to get to my lectures and I was coming from Surulere going to LASU. I was really stressed up because of all these issues and eventually had an extra year because I was always falling sick. I will miss examinations and everything, so I had an extra year. When I finally graduated, I started a baking business because I didn’t want to work for anybody. I didn’t want anybody to say ‘you didn’t come to work today’. I wanted to be my own boss. So, I ran that for 15 years.
In this era when people living with sickle cell disorder keep to themselves, you have a published biography; what inspired you?
When my late grandmother who had being telling me to write a book said ‘I am waiting for your book’, I just thought maybe she wants me to write because she always knew I used to write. I thought she wants me to write a fictional book or some story or novel or something. When I asked further, she said ‘not this, I am waiting for a story; a story about your life’. I felt at that point, that I had not achieved anything. I had gone through struggles, why should I be writing a book? Unfortunately, she passed on and that was when I realised this book I was supposed to have written but never did it before her demise. I finally got the courage to write it and it just blew up. The story just blew up. I was on television, radio and newspaper.
That was 2005. I was about 40 years. Afterwards, I got a call from somebody who now said oh my parents don’t want to enroll me in school blah blah blah, so I said what? You mean this is happening? That was when I took up the boldness and I went on Funmi Iyanda’s show; and one person was like why don’t you be an advocate for people with sickle cell? So, after much thinking, that was when I decided to quit my baking job and start the NGO and it has been a long 10 years because it wasn’t initially easy because people did not understand what I was doing. They feel what is the big deal? So funding was based on personal savings and my friends and I thing. But we have gradually been able to let people know what we are doing and gradually we are getting more funding. That’s basically it.
What was your first reaction when you first realised you had the disorder; and how did your parents react too, compared to what we have today?
Then I just wondered why I had the syndrome. I wondered why I was in the hospital? Why am I this? Am I the only one? You know that kind of thing. Especially the period when I was in bed for a long time. It got to a point of depression. At one point, I almost took my life. Apart from the legs, some people said I had this issue of leg ulcers that don’t heal or they can take three to 10 years to heal, you know, and so I had to deal with all these issues. No school and all that. It took a while before I gradually began to accept who I am. Then I found it easier.
My parents, though were medical minded, it was 1965 and they were in the United States. They were working in US and they were coming to Nigeria and they didn’t know anything about sickle cell. They gave birth to me and it was one doctor in the whole of the Lagos University Teaching Hospital (LUTH) who figured out what was wrong with me back then and that’s how they knew that okay this is it. To me they were more protective, sometimes I use to tell them they were over protective, because they were always worried and you know that ignorance is bliss. When you don’t know you are not knocking your eggshell. They were educated about these things they were more careful, don’t do this, don’t do that and I always make a joke that my own sickle cell was very royal because I had every complication you can think of that you will find in sickle cell but they really supported me all the way even though they were protective. Sometimes I was stubborn as a girl; I want to do this and they said ‘okay, if you want to do it, I will allow you to do it’.
How old are you?
This would be my 54th year on earth.
How many are you in your family?
Just two of us. My sister and I. My parents didn’t have another child. I am sure they just said let’s stop here. But you know that’s the reality, some people will still be going on wishing that the next turns out differently.
Compared to then, what will you say is the level of awareness of sickle cell anaemia among Nigerians?
It’s better now. I mean, then people didn’t even know anything about their genotype issues. People just marry. Although, there are still villages and people who still do that. Yeah, but at least in cities now, people are more conscious even though they get married, they know that it is a choice that they personally made, it’s not that oh they didn’t know. It’s definitely better, it could be better but it’s better than before way back.
Being a sickle cell advocate, are you for avoidance or management?
Basically, I am a bit of both. Let me say why I have always said something that it is everybody’s right for association. You can’t force anybody because people have this rule that, ‘oh no, we must put a law to ban them if not in Africa and other Mediterranean region and everywhere’. There are other genetic disorders that, when two people get married, may have unhealthy child.
I am for ‘educate them’. Let them know this is the issue after that it is up to them to decide what they want to do but let them know. Tell them the intricacies and don’t educate them as if; you know when you tell a child, ‘oh! Don’t touch fire’, that is when he will go and touch fire. But when you educate a child about it, it is better. Tell them if you do this, this is what will happen. Don’t rather sit down and shout over their head.
Putting laws will not even help, because there are situations where people with AA are now stigmatising people with SS and even AS, which is even a misconception. So, I think it should be a balance. Educate people and let them make informed choices; the right choice themselves. Especially in rural areas because I always say that unless you have financial, emotional and family support don’t enter into a relationship because all three are needed it if you are going to have a child with sickle cell.
Tell us about your foundation and book?
I started Sickle Cell Advocacy and Management Initiative (SAMI) when I wrote the book. The book was titled ‘Still Standing’. And it was the autobiography of how I overcame sickle cell and that pushed me to start the NGO because people started reading the book and they were inspired, including people who don’t live with sickle cell. They tell me ‘oh! I gave your book to somebody else because it inspired people to see that yes you have challenges but you can overcome it regardless of whatever challenges you are faced with’. So that started the NGO. Our aim is to provide support for people with sickle cell, advocate and create awareness about sickle cell. That is why we go into outreaches to do genotype testing and we have a full outreach, which we run every third Saturday of the month where we help people with sickle cell. We have doctors. We give medicine free of charge, we don’t take a dime and they come every Saturday to receive that healthcare and we also run a radio programme on Eko FM where we educate people about sickle cell. The foundation was 10 years last year, it will be 11 years this year. And the radio programme is ‘Touch a Cell with Toyin and the Gang’ and it’s aired every Thursday by 4:30pm on Eko FM.
What are some of the challenges you faced in the society due to the disorder while growing up?
First as I mentioned earlier, disability issues in this country is huge. People you expect to have a better understanding of disability don’t. From churches to banks, to NGOs themselves. Disability access is poor; that’s one thing I think some people just thought oh she is small, she doesn’t have that energy, abeg let her just sit in the car you know. Those of us living with disabilities have a tendency to believe that we cannot amount to anything. But I think every person dealing with sickle cell should be given a chance.
What will you tell parents managing children with disability?
I will tell them that they shouldn’t give up on that child. They should try and attach themselves to an organisation that can help them, help the child and help them understand the child. I hear some people say, ‘my child with sickle cell is terrible’; is it the name of the sickle cell? Everybody’s experience with sickle cell is different and the thing about sickle cell is, if you start early from the minute the child is born, educating that child on how to manage his/her health and you managing that child’s health; they are likely to have less issues than somebody who didn’t have that kind of foundation.
My message is that people with sickle cell are like any other person. Yes, they have a genetic disorder but there are so many other genetic disorders, invisible illnesses as I like to call them that exist but it doesn’t stop them from being somebody and they need to be supported to be able to achieve their own dreams like any other person. It’s not a death sentence. Yes, some people; mostly due to mismanagement, die before they are 50. But if they are managed well, and if they are well informed, supported and loved they can live beyond 100 years. You will find that because of the stigma, there tend to be emotional issues faced by careers, because of the stigma they are depressed. The mind is a delicate thing. You have to first heal the mind before the body. So, it is very important that we support them and not stigmatise them.