Doctor told my mum I would die at 21 — 64-yr-old man

Fanu

What is your name?

I am Wale Fanu. I was born on April 21, 1950. I am into film business.

When did you become aware you are a sickle cell carrier?

I never knew what sickle cell was. But one day a letter was brought from a doctor that I should be taken to Kano to do a blood test. (We were living in Zaria then). We went to Kano and did the test. When the doctor got the report, he told my mother that he now knew what was responsible for my frequent sicknesses.Till today, I am still searching for an answer to the question you asked. Last year, I went to visit somebody who was close to my late mother to find out from her what my mother said when she noticed that I was troublesome health-wise. She told me that all my mum was saying then was to pray that God should please spare my life. I never thought of all these things until my mother passed away. I was 13 years old when the doctor told my mum what was behind my ill health. Till I buried my parents, I could not ask any of them the meaning of sickle cell and why I am the only one who has it in the whole family.

How many siblings do you have?

My mother had four children and I am the only one who has sickle cell anaemia. I have never heard of anyone having sickle cell in my family and I didn’t know how my parents felt seeing me in crisis or whether neighbours made my mother a laughing stock. But I know that it was a very stressful and painful experience even when we went on holiday to our family friend’s house. I was sure she would be scared of me having a crisis in the place. I was always having crisis but I learnt something from every situation I went through. If I am to have a crisis in a particular place and know that nobody can help me there, I will try the little medication I know which would work for me.

What do you think has helped you cope with the condition thus far?

It has nothing to do with lifestyle. I think it has to do with knowing myself and not going beyond my capacity. I do not have the luxury of clubbing or attending parties. Even when I was young and had the opportunity to attend clubs, my friend would always discourage me. But if I had to trek from CMS, Lagos to Obalende where my office was then, I would trek. When I started growing up and started interacting with other sickle cell patients, we started relating and sharing tips on how to manage crisis.

Have you suffered any form of discrimination?

No. There has been none. When I was young, I played football with my friends. In fact, I could play football in the afternoon and head for the hospital the following morning because I was in crisis overnight. Sometimes, it could start before we left the pitch. Once I felt the sensation, I would call on my friends to help me massage some parts of my body or apply hot water.

The condition must have made you careful when choosing your partner?

(Cuts in) I never bothered. Let me tell you something about my life, I never bothered about most of the things that happened to me. When I turned 60, my elder sister told me something that my mother said and I found it funny. She told me that my mother said even if I was going to die early I should at least have a child. I told her that if I had known she wanted that I would have given her many children before her death. I was 25 when I got married.

Did you feel you have survived the condition at that time?

There was never a time I felt I have outlived sickle cell disorder. I still have crisis. I remember one tedious trip I took to the United States of America in 2011. It took me about two days direct flight to California. I was close to my brother’s house in California when I called him to say I had a feeling I would experience crisis. That night, we rushed to a chemist and bought hot water bottle, ointment and aspirin which I was very careful of using when I was young. When crisis gets to a stage one doesn’t bother about what happens, one will just be hoping that the pain would reduce. I don’t hide my condition from anybody so that when I experience a crisis, people around will know what to do. If I am in a place for more than two or three weeks, I will go to the nearest hospital to report myself so that if I am rushed there, the doctor will know what to do since my record is with them. Unfortunately, it is not every sickle cell patient that wants people to know his or her health situation. There was the case of one of my classmates, a boy, who died and his mother and my mother ensured his death was hidden from me. She knew the boy had a medical condition similar to mine. The doctor specifically told my mother then that I would not live beyond 21.

How did she take the doctor’s report?

That was why I went to meet her friend to know how she felt despite knowing that I had been medically pronounced to be unable to live beyond 21. I was like a fragile glass to my mother. If there was a noise anywhere, she would be shouting my name to be sure I was safe. The day my mother died, I was 40. She was 70 then. We share the same birth date.

Are you not worried that you smoke despite your medical condition?

This question came up when a journalist came to my office with a friend of mine. He noticed that within 10 minutes of our sitting together I had smoked some cigarettes. The journalist screamed when he learnt I am a sickle cell patient and still smokes. I told him I started smoking before I was 10. My mother never knew but some family members got to know when I went to spend holidays with them.