Today, June 19th is World Sickle Cell Awareness Day. Have you ever wondered what Sickle Cell is, what it is like to live with it and everything in-between? Well, you’re in the right place. In this interview, we give you an all access pass into the life of a 71 year old sickle cell warrior.
- CAN WE MEET YOU MA?
My name is Grace Ibironke Ibitoye. I was born on 19th May, 1949.
- WHEN DID YOU BECOME AWARE OF YOUR GENOTYPE?
It was early as 1956. Although I had always been sick before then but nobody knew what exactly was the issue. My grandmother then thought I was pretending and only trying to escape house chores. I had series of attacks and they usually happened at night. My father had two wives and my junior brother was given admission to school before me. Then, admission was based on physical maturity and because of my physique; the headmaster did not believe that I was old enough to start school, not until my father showed him my birth certificate. While in school, I became sick so often and my grandmother would say I was being lazy and did not want to learn. Eventually, my father took me to the hospital and that was when we discovered that I have the sickle cell.
- CAN YOU TELL US WHAT SICKLE CELL ANAEMIA IS ABOUT?
I am not a medical personnel. What I know about it is that it is a blood deficiency. One can have it from parents who are carriers of sickle cell. Later on I found out that I was Sc and not SS. They usually say SC is milder but that was not the case for me.
- DID YOU EVER FEEL LIKE A BURDEN TO YOUR FAMILY, IF YES, HOW WERE TO ABLE TO OVERCOME THIS?
I thank God my father was an educated man; hence, it was not a burden to him at all. However, to my grandmother, I was seen as someone pretending and my siblings also just pitied me always.
- CAN YOU TELL US GENERALLY WHAT LIVING WITH SICKLE CELL IS LIKE?
Ah! My daughter, it has not been easy. It affects your everyday living. You have no idea when the attack would come. I was taken to a number of prophets and native doctors. I have many incisions on my body as a result of that. I took some concoction with pap every day. Sometimes, while in pains, I would ask those around me to use mortar on me to reduce the pain. It has not been easy at all.
- THERE IS A COMMON MISCONCEPTION THAT SICKLE CELL WARRIORS HAVE ISSUES WITH GETTING PREGNANT AND CHILD BIRTH, CAN YOU TELL US YOUR EXPERIENCE?
When I became a Christian, things changed for me. This brought surprise to my family. I found a man who wanted to marry me and was ready to be with me despite all that I went through. We got married and surprisingly, I got pregnant the same month we got married. I had no issues all through the conception period. It was at the point of delivery that I started having problems. My first child was so big; I was in labor for so many days. The doctors eventually had to use forceps. For my second child, my water broke unlike the first, but they still had to use forceps. After 6 years, I conceived again. I thought that pregnancy was going to take my life, but it didn’t. I had my delivery through caesarean section. A year after that, I got pregnant again and at this point, my previous child was battling with measles. I also had my last child through CS. It wasn’t so easy but I scaled through.
- DID SICKLE CELL ANAEMIA LIMIT YOUR CAREER GOALS IN ANY WAY?
Of course! I couldn’t go far at a stretch; I had to do it in bits. After completing my SSCE exams, I worked with a Christian organization before moving on to obtain my NCE. I couldn’t do all of this straight up. It was after I had 2 children I decided to pursue my degree. My walking also got affected.
- HOW DID SICKLE CELL ANAEMIA AFFECT YOUR SOCIAL LIFE?
It did not affect my social life so much. I have a community of people around me who I relate with so well. I personally did not allow it to affect my mind and relationship with people. Most people were not aware of my condition. It was at times I became critically ill that more people became aware.
- WHAT ARE YOUR ROUTINES FOR HEALTH MANAGEMENT?
I once had a major attack which no one thought I would survive. In fact, people had started weeping for me. At that point also, doctors were on strike. When I survived it, my children took me to see a doctor in Lagos, Nigeria, who then prescribed a lot of things for me. I take folic acid, paludrine and some other supplements every day. I take fruits such as cucumber, avocado, apple and pawpaw every morning. I take my meal around 4pm daily. I stay away from carbohydrates and feed more on beans and plenty of vegetable. In fact, all of my meals have vegetables in them. I take a lot of fish (now I eat ones with scales), I also eat chicken and eggs. I do not eat red meat except at occasions. I also drink a lot of water.
- WHAT ADVICE CAN YOU GIVE TO A CLOSE RELATIVE (PARENT, SPOUSE, SIBLING OR DAUGHTER) OF A SICKLE CELL PATIENT? HOW BEST CAN THEY OFFER HELP?
I took special interest in sickle cell warriors as a teacher then. I would always advice their parents and let them know that it is not the end of the world. I know of a couple whose children all have sickle cell. This almost led to a divorce. I made them understand that that wasn’t a solution to the problem. To those with sickle cell warriors around especially parents, take care of the children, give them the right food at the right time and do not over work them. Sickle cell warriors are usually very intelligent and can always catch up with what they missed out in school if helped properly. Keep them warm always. A number of sickle cells warriors when not sick are usually agile and can be very stubborn. They want to do things that are probably beyond them, do not discourage them, rather help them to understand. To everyone who has sickle cell warriors around, do not despise them but continue to encourage them.
- DID YOU AT ANY POINT FEEL LIKE GIVING UP?
Yes I did! At some point I asked God to take my life. I told my doctor at a point that the pain was too much and I could not go any further.
- WHAT HAS KEPT YOU GOING AND BROUGHT YOU THIS FAR?
My faith and a strong determination to rise against all odds. My children would always call me a stubborn person. I kept on fighting and refused to give up. I have 2 siblings who are also SC, my immediate younger sister is 67, my junior brother is almost 60. I have served as a source of encouragement to them and to many other warriors.
- ANY WORD OF ENCOURAGEMENT TO A WARRIOR OUT THERE?
Sickle cell is not the end of life. It all depends on you, be determined, never give up and by God’s grace, you will make it. Maintain a healthy routine and ensure to always drink a lot of water. Also, do not allow sickle cell limit you or prevent you from doing the things you can do.
TO EVERY ONE READING THIS,REACH OUT TO A WARRIOR TODAY, BE A SOURCE OF STRENGTH AND HOPE. SICKLE CELL IS NOT A DEATH SENTENCE. END STIGMATIZATION TODAY, KNOW YOUR GENOTYPE AND TOGETHER WE CAN MAKE THE WORLD PAIN FREE.
This Interview was conducted by LAKE JURONG, SPRING LEADERSHIP HUB. You can reach us on the following platforms:
Mail: [email protected].
Facebook: @Leaders Quarters LDH— community.