‘My parents told me when I was about 12 or 13 that I had sickle cell disorder’

•Why nutrition is important for people with sickle cell disorder

Bukola Bolarinwa is a lawyer, sickle cell and blood donation advocate. She is one of the team lead for the Sickle Cell Aid Foundation (SCAF) and the Founder of Haima Health Initiative. Haima helps to increase blood availability by organising blood drives and linking patients to blood donors. She is passionate about increasing awareness about sickle cell and supporting warriors. In this interview, she talks about her book and why nutrition is significant to those with SCD.


As a child, did you suspect anything was wrong even before you learned about your Hb SS status?

I would not say I suspected anything but I just knew that before any school outing or event, my parents would warn me not to get too excited because that would make me feel pain.  As a child, I did not understand the concept so I would still get excited and, of course, become sick as my reward.


It is certainly difficult to stop a child from getting excited, isn’t it?

Yes, of course.  I have to credit my parents because they never stopped me from doing anything or going anywhere with my friends.


So when and how did you get to know about your Hb SS status?

My parents eventually told me when I was about 12 or 13 that I had sickle cell disorder, although I did not really know what that meant at the time.


In what ways did your condition affect your schooling?

The main thing was that I tended to like last minute studying before an exam.  Like other students, I tried to pull all-nighters but then I would get a crisis on the day of the exam because I had not slept.  I had to write several tests and exams in the sick bay!  Luckily, by the time I went into the University, I knew that this method was not for me.  I resolutely put an end to last minute scrambles.


Why did you decide to become a Lawyer?

At that time, I loved reading, writing and talking and my dad advised me that those skills are perfect for a career in law.


Looking back now, do you think that you received enough support from your classmates and teachers?

Yes, I received great support from my classmates and teachers.  I did not feel excluded although some students did make fun of my small size, like kids usually do.


What measures do you think schools can put in place to make schooling easier for children with sickle cell disorder?

The most important thing is for teachers to understand what sickle cell disorder is, how it presents in children and what their limitations are.  With SCD, they should understand that, not just exercise but also, too much cold, heat or sitting in one position for a long time can also cause a crisis.  Once they know, it is also important not to exclude them and make them feel weak or incapable.  Children are much smarter than we give them credit for, so teachers can ask warriors what it is they would like to do and what things they cannot.


 Warriors?  You have used that terminology before.  What does it mean?

Warrior is a term used to describe people living with SCD. We use it as a positive alternative to “sicklers” and other derogatory terms used to describe us.


What did you do after graduating?

I went to Law School in Abuja and then did NYSC before starting my career, first as a lawyer and now, as a consultant.


Can you tell us how you met your husband and were there any challenges on account of your Hb SS status?

We met at university.  Initially I was hesitant to tell him because I was not sure how he would react but he eventually found out when I had a series of crises.  I wouldn’t say we had any challenges per se but we did go to a lab to check his status because even though he said he was AA, I wanted to be sure.


Would you have still married him if he had turned out Hb AS or Hb SS?

This is a challenging question. At that time, probably not but now it is difficult for me to imagine my life without him.


Do you have children and have you checked their Hb status?

None at the moment.


They will surely come.  Recently you launched a book written by you.  What is the title?

It is titled “Healthy Warrior’s Cookbook” and was published last month.


And what was your motivation to write such a book?

It is filled with healthy recipes for people living with sickle cell disorder.  I have always loved food and wanted to write a cookbook to show how important nutrition is to improved health for people with SCD.  The focus for SCD has always been on medication.  While this is vital, so many other things contribute to improved health for warriors – sound sleep, mental health, financial stability, social support and nutrition.

My mum was always focused on providing us with balanced meals and taught me how to cook from a young age because of her passion for food.  Working with SCAF, I realised that a lot of warriors do not even understand the basics of what a balanced and varied diet is.  When I try to talk about nutrition, the immediate assumption is that you need lots of money to eat well – this is totally false.  A good diet does not need to be expensive or complicated or difficult to make.

The idea for the cookbook came from a conference we had at the SCF.  Lots of parents with SCD children did not know what meals could best support their health.  In addition to recipes, the cookbook has lots of nutritional tips, financial tips and healthy foods to incorporate.


Do you have any hobbies and what are they?

I love cooking and eating – I am a real foodie.  I love trying new recipes, cuisines and experimenting with new ingredients.  I share my cooking and food journey on my Instagram page – @thewarriorkitchen.  I also love reading, learning, travelling and movies.


You are currently in the UK.  Would you like to share a couple of your experiences with Warriors in the UK?

It has been interesting to see the different experiences of warriors. One positive thing is that I feel like warriors here are much better educated about their health. They are able to speak up for themselves and demand better treatment from healthcare workers, employers and schools. They know their rights and know that the law will always support them. I wish warriors in Nigeria can become more confident in themselves.


What is the main focus of the Sickle Cell Aid Foundation (SCAF) and how much success has it achieved so far?

SCAF is focused on two things improving education on sickle cell and supporting people living with SCD. We have lots of successes including carrying out over 10,000 free genotypes test. We have also supported people living with SCD with over N30million in medicines, surgeries, and educational and psychosocial support. Last year we supported over 300 warriors during the pandemic with medical and food supplies across six states. We have several programs supporting people living with SCD and are working on more educational materials.


That is fantastic!  How are you able to balance your work as a lawyer and your activities in the SCAF and Haima Health Initiative?  Do you ever find it stressful?

It is always a delicate balance. But I don’t do any of it alone. I work with a wonderful team of volunteers and advocates who are passionate about SCD and blood donation.


What are you doing to ensure your continued healthy status?

I try to avoid anything that triggers crisis like stress, extreme heat or cold, physical exertion. I take my routine medicines, drink lots of water and of course I eat a balanced diet including recipes from my cookbook!


What advice would you give to other warriors?

This is always a tough question because everyone’s journey is so different.  I think my main advice is that life is full of ups and downs, especially with SCD.  Some days, it feels like everything will never get better, but it will.  Stay positive.



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