What is your name?
My name is Mrs. Grace Urowayilo. I am 57 years old.
When did you discover that you had a sickle cell disorder?
I knew since I was young. I was diagnosed with it at a public hospital in Lagos. But when the test result first came out, I was told that I was anaemic but they never told me the meaning of that. After I got married, the pains and symptoms became more persistent. Later, my husband took me to the Lagos University Teaching Hospital; that was where we knew I had sickle cell condition. That was about 20 years ago. The pains were terrible, but I thank God that I survived. I have not had any major crisis recently.But anytime I notice I am tired, I try to relax.
Can you describe the pains?
Whenever I had a crisis, I felt so much pain all over my body, from my head to the toes, even in my teeth and fingernails. Sometimes I would roll on the floor or squeeze my body to bear the pains. I also visited the hospital regularly to be given blood transfusion and placed on drips. Then I lived on blood transfusion, drips, injections and drugs. The largest pint of blood I have been asked to take was five pints. That was in 2008. But miraculously I have not done any blood transfusion since then. I am a Christian.
How many blood transfusions have you undergone?
I have undergone approximately 20 blood transfusions. But my drug for now is water therapy.
How do you mean?
I drink an equivalent of six to eight big bottles of table water every day. But I still take the recommended injections and drugs prescribed by my doctors. I don’t take drugs anyhow. Doctors told me this water therapy is also good because it helps to flush my system.
Has there been any point you felt like giving up?
No. I remember an incident which happened that got me admitted to the hospital and I was to be given five pints of blood. I was getting my hair plaited and suddenly I felt pains all over my body and a crisis started. I was rushed to the hospital and I passed out in the ward before my husband came there. My daughter told me about this later. By the time I regained consciousness, I had been given the fourth pint of blood with some drips.
How has your husband coped with your condition?
I would say that I have a blessed husband who did not run away during the perilous times.He stood by me all through. There has not been any point during any of the crises that he wanted to walk away and give up. He was able to bear with me. He had a friend who had children that were SS and the man used to give him drugs for me.
What about your children?
I have four children, but they are all AS. My husband is AA.
How did they take the news of your condition?
They felt sorry that I went through the pains, but they are happy now that I am alive. They have seen and heard stories that carriers of sickle cell don’t survive it. But my story is a different one. So, my children and my husband are happy about my ability to carry on.
How much have you spent since?
I have spent millions of naira on my health. I thank God for His help and the assistance of people around me. At the initial stage, the crises stopped me from working. If I had started working earlier, I would have spent 30 years in service by now.