AN INTERVIEW WITH SICKLE CELL WARRIOR EBUN OLUMIDE AKINNINBOSUN EKUNWE, MBBS, MD. MPH
- At 71, has never received blood transfusion
- Worst crisis happened when outside Nigeria
- Local foods such as garri (cassava) can help ease out SCD
- Feels stronger in old age than when younger
- Plans to live to 120 years
- Says seeking to criminalize SCT unions is ‘sheer madness’
How did you cope with medical school living with SCD? Inadvertently, by eating local. Dr. Orji has postulated that rather than being a congenital disease, Sickle Cell disease, because it is so eminently controllable by the right nutrition, should be classified as a nutritional disease.
The truth lies somewhere in the middle of genetics and nutrition and as I described in my book, it is known as epigenetics. A scenario in which our actions can superimpose themselves on our genes and ‘bend’ them, especially in our children and grandchildren. This is the reason my grandchildren do not have sickle cell trait.
I can say that our love of garri has been our epigenetic factor. Growing up, I loved garri, not because I knew its benefits in sickle cell disease but just by chance or perhaps because God was looking out for me by giving me the love of local foods, especially garri.
Did you take into consideration the genotype of your partner before marriage?
We had the tests, we knew a person with sickle cell disease should not marry even a carrier of the gene. But our knowledge was purely academic as our emotions got the better of us. My husband was a carrier of the sickle cell gene; that is, he was AS.
We knew that but we still went ahead and married. But it is not a recommended course of action unless you have faith enough. With each pregnancy, we resorted to praying and when our first child had AC, the late Olikoye Ransome-Kuti who was a professor at LUTH, Idi-Araba at that time (before he became Nigeria’s Minister of Health and then went to the World Bank), was extremely excited to see that prayers could override science.
Did your union produce any SS? Any SC? Any AS, AC? How many of each?
Our marriage was AS x SC. The first child is AC, which is why Professor Ransome -Kuti was so excited. It was the best possible combination that we could get from our marriage configuration.
The second child is AS. We put that S down to the fact that we got a bit careless in prayer .
Age at diagnosis with sickle cell (state if you are with SS/SC/CC, etc). Do you have other family members/friends with sickle cell?
We grew up in an era when sickle cell disease was not very well known. Our people had traditional names for it but they did not know it had a basis in science. Consequently, it was not until I went into the environment of Medical School that my diagnosis was made. I was diagnosed as SC, which I refer to as 75% of the SS, while AS is akin to 50%.
My parents were AS and AC respectively. Eating local is seemingly helping to breed it out of my descendants.
What event(s) preceded your diagnosis with sickle cell anaemia? Do you know if your parents were aware of their genotype and its implications prior to marriage?
Not at all, my parents, like other parents of that era, had no clue about genotype. Keep in mind that we are talking about the 1940s, long before the science of sickle cell disease had been elucidated anywhere in the world.
I had had what we now know as a sickle cell crisis – severe bone pain and extreme pallor. My pathology professor thought that I should be tested for sickle cell disease. It came back positive. Because of my good health during periods when I did not have a crisis, the diagnosis was almost unbelievable.
‘if you have the sickle cell and you find yourself in a garri-less situation, you can substitute vegetables that are known as cruciferous vegetables ‘
Have you ever received blood transfusion?
What has been your most memorable sickle cell ‘crises’?
It is hard to pinpoint any one because one minute, I would be up and running and the next, I was in crisis. In those days, I had a lot of crises but my health situation has tended to be an ‘all or none’ scenario even to this day. However, the two most dramatic crises happened when I was outside Nigeria. One happened in Galveston Texas and the other in Memphis Tennessee.
It was only during the research for my book did I understand why my worst crises happened outside Nigeria. It is known as epigenetics and while there are experts that you can learn from, the piece about it in my book – Living Well with Sickle Cell Anemia; One doctor’s Story – may be your most practical guide yet. And that is because it was written by someone with first-hand knowledge of the effects of epigenetics in real life.
Roughly, how many times have you ever been hospitalized because of a sickling crisis?
Phew, that might be hard to recall. I can readily say ‘a lot.’ I remember taking my GCE ‘A’ level exam from a hospital bed in 1966 before the doctors even knew about sickle cell diagnosis. As I said earlier, I had a lot of crises and most required hospitalization.
Have you ever been discriminated against for having sickle cell – have you ever felt stigmatized for having the condition?
Not at all. It may be because I have what is usually referred to as a strong personality. For instance, I believe that there is nothing wrong with peer pressure. Just make sure that you are the one exerting that pressure!
How do you cope with the challenges of daily life with SCD?
With the knowledge of the nutritional aspect of epigenetics, I no longer have crises. I make sure I eat the right foods as you will find in my book and take 800 mcg of folic acid every day without fail. Hydration is also critical. As we speak, I have a cup of some liquid or the other by me.
Has sickle cell affected your outlook on life? If ‘Yes’, How?
Not in any particular way, except that I am grateful to my maker for seeing me this far. Nobody in the late 1990s would have believed that I could live to see 70 years and beyond but here I am, enjoying life more than even when I was younger, living in a stable, crisis-free state.
‘ I believe that there is nothing wrong with peer pressure. Just make sure that you are the one exerting that pressure!’
My principal in the secondary school, Dr. Tai Solarin, had one important motto: Knowledge is Light. I totally agree and recommend arming oneself with as much knowledge as you can. Those who have read my book have reported doing better with their particular sickle cell scenario.
What do you think about sickle cell carriers getting married (to sickle cell carriers) if they knew of the risks to their offspring? What do you think of banning (and punishing) marriage between sickle cell carriers as proposed by a State government in Nigeria?
Marriage between sickle cell carriers is not scientifically recommended, that is, unless, like us, you have a ton of faith.
I had not been aware that a state government wanted to ban and punish marriage. That is sheer madness. A government can counsel and provide support, but to punish for marrying the one you love?
You did say garri is good for SCD – how come?
Interesting but it is true. Garri contains a chemical compound that very effectively controls sickling. Great, isn’t it? I put this phenomenon down to God’s wisdom that He always manages to give us foods that are antidotes to our disease conditions, no matter where on earth we live. He gave us garri for West Africa where the SCD is rampant.
But if you have the disease condition and you find yourself in a garri-less situation, you can substitute vegetables that are known as cruciferous vegetables. They also contain the chemical compound that helps to stop sickling.
‘ if you did deep enough within science, you will bump into God.’
When did you go to a college to become a Pastor?
I attended Bible College in 1997.
How do you marry being a pastor (religion) with being a medical doctor (science)? Do the both hinder or help one another?
For me, Christianity (not sure of religion – since all religions are human attempts to find God and Christianity is God’s effort to find and save man) and science are complementary, supporting each other. That is if one is not afraid of the truth, which one must search for with an open mind.
For instance, I told my eye surgeon once that I plan to live to be 120 years. He was so startled that he stopped doing whatever he was doing in my eye. And then he revealed that the telomeres of our DNA retain the capacity to divide until the age of 120. At the time he made that statement, I had not heard of telomeres but I was so open to knowledge that I researched it.
And true enough, the eye surgeon was right on. It confirmed my thinking that if you dig deep enough within science, you will bump into God.
What is your book, CONQUERING SICKLE CELL – A PATIENT’S STORY, all about? Please give a synopsis.
Rather than write an entirely new synopsis, allow me to copy and paste here the back cover of my book. It is included below:
‘To look at me, you cannot tell that I was born with sickle cell anemia. At 70 years of age, I am living healthy and pain-free in spite of having grown up with severe debilitation. What is my secret? There is a body of scientific knowledge on how nutrition impacts our genetic code.
With my insight as a medical doctor, I have discovered the secret of living well with hereditary diseases, with special reference to sickle cell disorders. In the past decade, I have studied and practiced to perfect this strategy.
‘Living Well With Sickle Cell Anemia: One Doctor’s Story’ is a description of how you too can perfect it to enhance your health. Soon after you get your hands on this book, the insights contained in it will ensure that you too start to live healthy and pain-free. In the book, you get the advantage of over a decade’s worth of study and practice.
Before too long, you (or your loved one, if you are also getting them a copy) will almost forget that you have sickle cell disease. When asked how you are coping with sickle cell anaemia, your response will be ‘What sickle cell?’
CONQUERING SICKLE CELL – A Patient’s Story
Why and when did you decide to write a memoir?
As I was turning 70 years of age, I thought it would be helpful to let the world know that it was possible to live to be a ripe age, sickle cell notwithstanding. I wanted readers to start viewing Sickle Cell Disease, not as the death sentence it was when I was young, but as a disease that they can survive and overcome. With the effects of epigenetics, they can actually help their children to NOT have the disease.
How has the reception of the book been?
Excellent, judging from the royalties I receive from Amazon.
What are your hobbies:
Reading and writing, mainly because these do not require too much physical strength of which I do not have much, Reading and writing allow me to conserve what little physical strength I do possess.
Which part of Yorubaland are you from?
Ondo Town, Ondo State.