How I survived the stigma of sickle cell —Modupe Olapade-Popoola

Family background?

I am the third in a family of six children and the only one with Hb SS. I had another sister who was diagnosed as having Hb AS but she died at 19 years of age in 1977.

 

Would you say your sister’s case is one of wrong diagnosis of genotype?

I wouldn’t know because we were diagnosed at the University College Hospital (UCH) but my crisis was more severe than hers. I have two brothers who are AA and another sister who is AS.

 

What of your parents?

My father passed on about 20 years ago but my mother is still very much alive.

 

 How was it then and now to have SCD?

I would say that it was more severe when I was much younger but now, with the experience, I can manage myself better and also because of the improvements, medically, to managing SCD generally. However, I remember when I was to travel to England for the first time; my father was reluctant for obvious reasons. But surprisingly, I did not have any crisis throughout my stay.

 

How did your family react to your condition and cope with it?

My parent and siblings were very caring, supportive and protective. They never wanted anything untoward to happen to me. This level of support helped me to cope to a large extent. I remember my mum went to see my school principal before I started secondary school. I was very active in school and in sports. I played netball and was conscious of my limits, which was why I refused to play for the school team.

 

How did you meet your husband?

Meeting my husband was an act of God. After my secondary school education, I worked with The Punch newspapers but then I lost my younger sister. It was a devastating experience for me as we were very close. So I could not continue to work at Punch. Shortly after, I sat for the intake test for UBA and came tops and was told to go for medical tests. When I went back for the result, I was directed to the bank and was informed that the bank is unable to offer me the appointment because of my genotype status. It was then it dawned on me that having sickle cell can be a limiting factor with regards to securing gainful employment.

I got another job in the audit unit of a textile mill. When it was time for me to go for my regular clinic appointment, I informed my supervisor who advised that I get the necessary permit from the Internal Auditor. She asked what type of hospital appointment and I told her about my SCD status as well as the need to go for routine clinic visit. I was allowed to go for the appointment, but on my return to work, the story had taken a different turn. The internal Auditor had noted on my request that I have SCD and therefore not fit enough for the position. She recommended that my appointment be terminated immediately. When I met the personal Manager, he was very sympathetic and instead transferred me to the personnel department. It was there I met my husband. We started as friends and the rest is history.

That experience made me determine not to work for anybody again. Eventually when I left, I decided I wanted to go into catering. My parent and siblings were against this decision and insisted that I rather opt for secretarial studies at Yaba Higher College. After a year, I was privileged to travel to London where my friend encouraged me to pursue my dream.

When I got admission into Yaba College, I lost contact with my husband. I also decided that I will not marry as I felt it will be difficult to find a man that will take care of me. But we eventually met again when my dad passed away and we got married in 1996.

 

It is obvious that this condition has impacted your life in different ways. How have you been coping?

I attended clinic regularly in UCH until a few years ago. Then I met Prof. Olu Akinyanju through a mutual friend and he was elated to see me looking healthy. It was Prof. Akinyanju that started me on hydroxyurea therapy.

 

Was Hydroxyurea helpful for you?

Yes, it was very helpful as I was looking more robust and my Hb level was high.

 

Apart from Hydroxyurea, which other medication do you take?

Just the normal routine drugs and more importantly I follow doctor’s order when being treated for a crisis.

 

Having faced stigmatisation severally, what is your advice for the affected persons going through it now?

The best way to deal with stigmatisation is to be confident and determined, and not to pay attention to what people say. For instance when I was in primary school, my friends called me “Abiku” but I always retorted that they are “olodo” meaning empty heads as the condition did not impact on my intellect. At every point I used my experience with stigmatisation as a stepping stone to move forward.

 

Why do you think there is an aura of hopelessness among affected persons?

It is because when we were young, the society made us believe that you will die young. But I was determined that I will not allow being labelled as “Abiku” to put me down. I know a boy whose parents wanted to go and dump him with the grandmother in the village. I had to talk to the parents to reconsider the decision and they were shocked when I told them I have SCD. I impressed on them that taking him to the village would be grave injustice. The parents couldn’t believe I have SCD. That meeting changed their perspective.

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What can be done to reduce the burden of SCD on the family?

Most parents cannot cope with the burden of care of affected child through vocational training and other initiatives that can improve their standard of living significantly. For instance, affected persons suffering from chronic leg ulceration can be trained in vocations that encourage use of the hands to earn a living.

 

 Tell us about your involvement with the Sickle Cell Club, Lagos

I am proud to be a member of the Sickle Cell Club, Lagos. I joined the club in the 90s and I am now the Honorary Secretary. Through its activities, the club has done a lot to create awareness as well as advocate for better conditions for affected persons in hospitals and other health facilities. This has helped to reduce the level of stigmatisation in the society.

 

Any last words you want to share with our readers?

Affected persons should ensure that they seek treatment in hospitals where they can get appropriate care, especially where you have haematologists who can provide specialised care. Do not self-medicate and seek counsel from genetic counsellors when in doubt.